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2021 | Pädiatrische Hämatologie und Onkologie | OriginalPaper | Buchkapitel

6. Besondere Patientengruppen und praktische Herausforderungen

verfasst von : Georg Rellensmann, Ingeborg van den Heuvel, Kerstin von der Hude, Lars Garten, Silke Nolte-Buchholtz, Boris Zernikow, Mandira Reuther, Jens Berrang, Thomas Berger, Carola Hasan, Michael C. Frühwald, Tim Niehues, Ulrich Neudorf, Anne Schönecker, Uta Schürmann, Uwe Mellies, Heike Bredow, Caroline Gauch-Ayar, Michael Frosch, Bettina Hübner-Möhler, Andrea Beissenhirtz, Almut Hartenstein-Pinter, Hauke Schumann, Arne Simon, Pia Schmidt, Anna Kämper, Birgit Mertens, Barbara Gertz

Erschienen in: Pädiatrische Palliativversorgung – Grundlagen

Verlag: Springer Berlin Heidelberg

Zusammenfassung

Das Spektrum an lebenslimitierenden Erkrankungen im Kindesalter ist sehr breit gefächert. Es reicht von seltenen genetischen Erkrankungen, angeborenen/erworbenen Anomalien und (Mehrfach-) Behinderungen über neurologische Symptomenkomplexe bis hin zu Krebserkrankungen. Genauso weit sind auch das Altersspektrum pädiatrischer Palliativpatienten und so unterschiedlich sind die Versorgungsorte, an denen uns diese Patienten und ihre Familien begegnen. Das Kapitel beschreibt, wie eine gute palliative Versorgung gelingen kann - ob schon perinatal, in der Neonatologie, auf der pädiatrischen Intensivstation oder beim Übergang in das Erwachsenenleben. Zusätzlich bietet es viel Information zu den wichtigsten Themenkomplexen in der pädiatrischen Palliativversorgung, wie z. B. bei chromosomalen und metabolischen Störungen, neuro-muskulären Erkrankungen, schweren Mehrfachbehinderungen u. v. a. m. Der Fokus in diesem Kapitel liegt vermehrt auf den palliativ-psycho-sozialen Aspekten, detaillierte Angaben zur medikamentös-medizinischen Behandlung finden sich in der gesonderten Ausgabe Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle.
Literatur
Zurück zum Zitat Adler K, Schlieper D, Kindgen-Milles D et al (2017) Integration der Palliativmedizin in die Intensivmedizin. Anaesthesist 66:660–666PubMedCrossRef Adler K, Schlieper D, Kindgen-Milles D et al (2017) Integration der Palliativmedizin in die Intensivmedizin. Anaesthesist 66:660–666PubMedCrossRef
Zurück zum Zitat Boss R, Nelson J, Weissman D et al (2014) Integrating palliative care into the PICU: a report from the Improving Palliative Care in the ICU Advisory Board. Pediatr Crit Care Med 15(8):762–767PubMedPubMedCentralCrossRef Boss R, Nelson J, Weissman D et al (2014) Integrating palliative care into the PICU: a report from the Improving Palliative Care in the ICU Advisory Board. Pediatr Crit Care Med 15(8):762–767PubMedPubMedCentralCrossRef
Zurück zum Zitat Bülow H-H, Sprung CL, Reinhart K et al (2008) The world’s major religions’ points of viewon end-of-life decisionsin the intensive care unit. Intensive Care Med 34(3):423–430PubMedCrossRef Bülow H-H, Sprung CL, Reinhart K et al (2008) The world’s major religions’ points of viewon end-of-life decisionsin the intensive care unit. Intensive Care Med 34(3):423–430PubMedCrossRef
Zurück zum Zitat Committee on Hospital Care, Institute for Patient-and Family-Centered Care (2012) Patient-and family-centered care and the pediatrician’s role. Pediatrics 129(2):394–404CrossRef Committee on Hospital Care, Institute for Patient-and Family-Centered Care (2012) Patient-and family-centered care and the pediatrician’s role. Pediatrics 129(2):394–404CrossRef
Zurück zum Zitat Davidson JE, Aslakson RA, Long AC et al (2017) Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med 45(1):103–128PubMedCrossRef Davidson JE, Aslakson RA, Long AC et al (2017) Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med 45(1):103–128PubMedCrossRef
Zurück zum Zitat Dryden-Palmer K, Moore G, McNeil C et al (2020) Moral distress of clinicians in Canadian pediatric and neonatal ICUs. Pediatr Crit Care Med 21(4):314–323PubMedCrossRef Dryden-Palmer K, Moore G, McNeil C et al (2020) Moral distress of clinicians in Canadian pediatric and neonatal ICUs. Pediatr Crit Care Med 21(4):314–323PubMedCrossRef
Zurück zum Zitat Edwards JD, Voigt LP, Nelson JE (2017) Ten key points about ICU palliative care. Intensive Care Med 43(1):83–85PubMedCrossRef Edwards JD, Voigt LP, Nelson JE (2017) Ten key points about ICU palliative care. Intensive Care Med 43(1):83–85PubMedCrossRef
Zurück zum Zitat Everhart JL, Haskell H, Khan A (2019) Patient-and family-centered care: leveraging best practices to improve the care of hospitalized children. Pediatr Clin 66(4):775–789 Everhart JL, Haskell H, Khan A (2019) Patient-and family-centered care: leveraging best practices to improve the care of hospitalized children. Pediatr Clin 66(4):775–789
Zurück zum Zitat Feudtner C (2007) Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatr Clin N Am 54(5):583–607CrossRef Feudtner C (2007) Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatr Clin N Am 54(5):583–607CrossRef
Zurück zum Zitat Garten L, Globisch M, von der Hude K et al (2020) Palliative care and grief counseling in peri-and neonatology: recommendations from the German PaluTiN Group. Front Pediatr 8:67PubMedPubMedCentralCrossRef Garten L, Globisch M, von der Hude K et al (2020) Palliative care and grief counseling in peri-and neonatology: recommendations from the German PaluTiN Group. Front Pediatr 8:67PubMedPubMedCentralCrossRef
Zurück zum Zitat van den Heuvel I, Nolte-Buchholtz S, Rellensmann G (2019) Pädiatrische. Intensiv-und Palliativmedizin–unsere Patienten brauchen beides! Intensivmedizin up2date 15(01):91–110 van den Heuvel I, Nolte-Buchholtz S, Rellensmann G (2019) Pädiatrische. Intensiv-und Palliativmedizin–unsere Patienten brauchen beides! Intensivmedizin up2date 15(01):91–110
Zurück zum Zitat Humphrey L, Schlegel A, Seabrook R et al (2019) Trigger criteria to increase appropriate palliative care consultation in the neonatal intensive care unit. Pediatr Qual Saf 4(1):e129PubMedPubMedCentralCrossRef Humphrey L, Schlegel A, Seabrook R et al (2019) Trigger criteria to increase appropriate palliative care consultation in the neonatal intensive care unit. Pediatr Qual Saf 4(1):e129PubMedPubMedCentralCrossRef
Zurück zum Zitat Institute of Medicine, Committee on Approaching Death (2015) Improving quality and honoring individual preferences near the end of life. National Academies Press, Washington, DC Institute of Medicine, Committee on Approaching Death (2015) Improving quality and honoring individual preferences near the end of life. National Academies Press, Washington, DC
Zurück zum Zitat Lutmer JE, Humphrey L, Kempton TM et al (2016) Screening criteria improve access to palliative care in the PICU. Pediatr Crit Care Med 17(8):e335–ee42PubMedCrossRef Lutmer JE, Humphrey L, Kempton TM et al (2016) Screening criteria improve access to palliative care in the PICU. Pediatr Crit Care Med 17(8):e335–ee42PubMedCrossRef
Zurück zum Zitat Madrigal VN, Patterson Kelly K (2018) Supporting family decision-making for a child who is seriously ill: creating synchrony and connection. Pediatrics 142(3):170–177CrossRef Madrigal VN, Patterson Kelly K (2018) Supporting family decision-making for a child who is seriously ill: creating synchrony and connection. Pediatrics 142(3):170–177CrossRef
Zurück zum Zitat Marc-Aurele KL, English NK (2017) Primary palliative care in neonatal intensive care. Semin Perinatol 41(2):133–139PubMedCrossRef Marc-Aurele KL, English NK (2017) Primary palliative care in neonatal intensive care. Semin Perinatol 41(2):133–139PubMedCrossRef
Zurück zum Zitat Meert KL, Clark J, Eggly S (2013) Family-centered care in the pediatric intensive care unit. Pediatr Clin 60(3):761–772 Meert KL, Clark J, Eggly S (2013) Family-centered care in the pediatric intensive care unit. Pediatr Clin 60(3):761–772
Zurück zum Zitat Morrison WE, Gauvin F, Johnson E et al (2018) Integrating palliative care into the ICU: from core competency to consultative expertise. Pediatr Crit Care Med 19(8S):S86–S91PubMedCrossRef Morrison WE, Gauvin F, Johnson E et al (2018) Integrating palliative care into the ICU: from core competency to consultative expertise. Pediatr Crit Care Med 19(8S):S86–S91PubMedCrossRef
Zurück zum Zitat Moynihan KM, Snaman JM, Kaye EC et al (2019) Integration of pediatric palliative care into cardiac intensive care: A champion-based model. Pediatrics 144(2):e20190160PubMedCrossRef Moynihan KM, Snaman JM, Kaye EC et al (2019) Integration of pediatric palliative care into cardiac intensive care: A champion-based model. Pediatrics 144(2):e20190160PubMedCrossRef
Zurück zum Zitat Nelson JE, Curtis JR, Mulkerin C et al (2013) Choosing and using screening criteria for palliative care consultation in the ICU: a report from the Improving Palliative Care in the ICU (IPAL-ICU) Advisory Board. Crit Care Med 41(10):2318–2327PubMedCrossRef Nelson JE, Curtis JR, Mulkerin C et al (2013) Choosing and using screening criteria for palliative care consultation in the ICU: a report from the Improving Palliative Care in the ICU (IPAL-ICU) Advisory Board. Crit Care Med 41(10):2318–2327PubMedCrossRef
Zurück zum Zitat Opel DJ (2018) A 4-step framework for shared decision-making in pediatrics. Pediatrics 142(Suppl. 3):S149–SS56PubMedCrossRef Opel DJ (2018) A 4-step framework for shared decision-making in pediatrics. Pediatrics 142(Suppl. 3):S149–SS56PubMedCrossRef
Zurück zum Zitat Prentice T, Janvier A, Gillam L et al (2016) Moral distress within neonatal and paediatric intensive care units: a systematic review. Arch Dis Child 101(8):701–708PubMedCrossRef Prentice T, Janvier A, Gillam L et al (2016) Moral distress within neonatal and paediatric intensive care units: a systematic review. Arch Dis Child 101(8):701–708PubMedCrossRef
Zurück zum Zitat Richards CA, Starks H, O’Connor MR et al (2018) When and why do neonatal and pediatric critical care physicians consult palliative care? Am J Hosp Palliat Med 35(6):840–846CrossRef Richards CA, Starks H, O’Connor MR et al (2018) When and why do neonatal and pediatric critical care physicians consult palliative care? Am J Hosp Palliat Med 35(6):840–846CrossRef
Zurück zum Zitat Sabatello M, Janvier A, Verhagen E et al (2018) Pediatric participation in medical decision making: optimized or personalized? Am J Bioeth 18(3):1–3PubMedPubMedCentralCrossRef Sabatello M, Janvier A, Verhagen E et al (2018) Pediatric participation in medical decision making: optimized or personalized? Am J Bioeth 18(3):1–3PubMedPubMedCentralCrossRef
Zurück zum Zitat Sidebotham P, Fraser J, Fleming P et al (2014) Patterns of child death in England and Wales. Lancet 384(9946):904–914PubMedCrossRef Sidebotham P, Fraser J, Fleming P et al (2014) Patterns of child death in England and Wales. Lancet 384(9946):904–914PubMedCrossRef
Zurück zum Zitat Trowbridge A, Walter JK, McConathey E et al (2018) Modes of death within a children’s hospital. Pediatrics 142(4):e20174182PubMedCrossRef Trowbridge A, Walter JK, McConathey E et al (2018) Modes of death within a children’s hospital. Pediatrics 142(4):e20174182PubMedCrossRef
Zurück zum Zitat de Vries M, Fagerlin A, Witteman HO et al (2013) Combining deliberation and intuition in patient decision support. Patient Educ Couns 91(2):154–160PubMedCrossRef de Vries M, Fagerlin A, Witteman HO et al (2013) Combining deliberation and intuition in patient decision support. Patient Educ Couns 91(2):154–160PubMedCrossRef
Zurück zum Zitat Wiener L, McConnell DG, Latella L et al (2013) Cultural and religious considerations in pediatric palliative care. Palliat Support Care 11(1):47–67PubMedCrossRef Wiener L, McConnell DG, Latella L et al (2013) Cultural and religious considerations in pediatric palliative care. Palliat Support Care 11(1):47–67PubMedCrossRef
Zurück zum Zitat Balaguer A, Martín-Ancel A, Ortigoza-Escobar D et al (2012) The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatr 12(1):25PubMedPubMedCentralCrossRef Balaguer A, Martín-Ancel A, Ortigoza-Escobar D et al (2012) The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatr 12(1):25PubMedPubMedCentralCrossRef
Zurück zum Zitat Barton L, Hodgman JE (2005) The contribution of withholding or withdrawing care to newborn mortality. Pediatrics 116(6):1487–1491PubMedCrossRef Barton L, Hodgman JE (2005) The contribution of withholding or withdrawing care to newborn mortality. Pediatrics 116(6):1487–1491PubMedCrossRef
Zurück zum Zitat Caeymaex L, Jousselme C, Vasilescu C et al (2013) Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Arch Dis Child Fetal Neonatal Ed 98(1):F26–F31PubMedCrossRef Caeymaex L, Jousselme C, Vasilescu C et al (2013) Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Arch Dis Child Fetal Neonatal Ed 98(1):F26–F31PubMedCrossRef
Zurück zum Zitat Campbell-Yeo M, Fernandes A, Johnston C (2011) Procedural pain management for neonates using nonpharmacological strategies: part 2: mother-driven interventions. Adv Neonatal Care 11(5):312–318PubMedCrossRef Campbell-Yeo M, Fernandes A, Johnston C (2011) Procedural pain management for neonates using nonpharmacological strategies: part 2: mother-driven interventions. Adv Neonatal Care 11(5):312–318PubMedCrossRef
Zurück zum Zitat Carter BS (2018) Pediatric palliative care in infants and neonates. Children 5(2):E 21 Carter BS (2018) Pediatric palliative care in infants and neonates. Children 5(2):E 21
Zurück zum Zitat Chin WL, Jaaniste T, Trethewie S (2018) The role of resilience in the sibling experience of pediatric palliative care: what is the theory and evidence? Children 5(7):E 97 Chin WL, Jaaniste T, Trethewie S (2018) The role of resilience in the sibling experience of pediatric palliative care: what is the theory and evidence? Children 5(7):E 97
Zurück zum Zitat Côté-Arsenault D, Denney-Koelsch E (2011) „My baby is a person“: Parents’ experiences with life-threatening fetal diagnosis. J Palliat Med 14(12):1302–1308PubMedCrossRef Côté-Arsenault D, Denney-Koelsch E (2011) „My baby is a person“: Parents’ experiences with life-threatening fetal diagnosis. J Palliat Med 14(12):1302–1308PubMedCrossRef
Zurück zum Zitat Craig F, Abu-Saad HH, Benini F et al (2008) IMPaCCT: standards pädiatrischer Palliativversorgung in Europa. Z Palliativmed 9(2):61–66CrossRef Craig F, Abu-Saad HH, Benini F et al (2008) IMPaCCT: standards pädiatrischer Palliativversorgung in Europa. Z Palliativmed 9(2):61–66CrossRef
Zurück zum Zitat Craig J, Glick C, Phillips R et al (2015) Recommendations for involving the family in developmental care of the NICU baby. J Perinatol 35(1):S5–S8PubMedPubMedCentralCrossRef Craig J, Glick C, Phillips R et al (2015) Recommendations for involving the family in developmental care of the NICU baby. J Perinatol 35(1):S5–S8PubMedPubMedCentralCrossRef
Zurück zum Zitat DAS-Taskforce, Baron R, Binder A et al. (2015) S3-Leitlinie Analgesie, Sedierung und Delirmanagement in der Intensivmedizin. Revision 2015 (DAS-Leitlinie 2015) – Kurzversion. GMS German Medical Science 13(Doc19) DAS-Taskforce, Baron R, Binder A et al. (2015) S3-Leitlinie Analgesie, Sedierung und Delirmanagement in der Intensivmedizin. Revision 2015 (DAS-Leitlinie 2015) – Kurzversion. GMS German Medical Science 13(Doc19)
Zurück zum Zitat Davies R (2004) New understandings of parental grief: Literature review. J Adv Nurs 46(5):506–513PubMedCrossRef Davies R (2004) New understandings of parental grief: Literature review. J Adv Nurs 46(5):506–513PubMedCrossRef
Zurück zum Zitat Eilertsen M-EB, Lövgren M, Wallin AE et al (2018) Cancer-bereaved siblings’ positive and negative memories and experiences of illness and death: A nationwide follow-up. Palliat Support Care 16(4):406–413PubMedCrossRef Eilertsen M-EB, Lövgren M, Wallin AE et al (2018) Cancer-bereaved siblings’ positive and negative memories and experiences of illness and death: A nationwide follow-up. Palliat Support Care 16(4):406–413PubMedCrossRef
Zurück zum Zitat Fernandes A, Campbell-Yeo M, Johnston CC (2011) Procedural pain management for neonates using nonpharmacological strategies: Part 1: sensorial interventions. Adv Neonatal Care 11(4):235–241PubMedCrossRef Fernandes A, Campbell-Yeo M, Johnston CC (2011) Procedural pain management for neonates using nonpharmacological strategies: Part 1: sensorial interventions. Adv Neonatal Care 11(4):235–241PubMedCrossRef
Zurück zum Zitat Flaig F, Lotz JD, Knochel K et al (2019) Perinatal palliative care: a qualitative study evaluating the perspectives of pregnancy counselors. Palliat Med 33(6):704–711PubMedPubMedCentralCrossRef Flaig F, Lotz JD, Knochel K et al (2019) Perinatal palliative care: a qualitative study evaluating the perspectives of pregnancy counselors. Palliat Med 33(6):704–711PubMedPubMedCentralCrossRef
Zurück zum Zitat Fraser LK, Miller M, Draper ES et al (2011) Place of death and palliative care following discharge from paediatric intensive care units. Arch Dis Child 96(12):1195–1198PubMedCrossRef Fraser LK, Miller M, Draper ES et al (2011) Place of death and palliative care following discharge from paediatric intensive care units. Arch Dis Child 96(12):1195–1198PubMedCrossRef
Zurück zum Zitat Garten L (2016) Perinatale Palliativversorgung: Warum es einer gesonderten Betrachtung bedarf. Paediatr Paedolog Austria 51(6):253–256CrossRef Garten L (2016) Perinatale Palliativversorgung: Warum es einer gesonderten Betrachtung bedarf. Paediatr Paedolog Austria 51(6):253–256CrossRef
Zurück zum Zitat Garten L, von der Hude K (2016) Palliativersorgung im Kreißsaal. Z Geburtshilfe Neonatol 220(2):53–57PubMedCrossRef Garten L, von der Hude K (2016) Palliativersorgung im Kreißsaal. Z Geburtshilfe Neonatol 220(2):53–57PubMedCrossRef
Zurück zum Zitat Garten L, Daehmlow S, Reindl T et al (2011) End-of-life opioid administration on neonatal and pediatric intensive care units: nurses’ attitudes and practice. Eur J Pain 15(9):958–965PubMedCrossRef Garten L, Daehmlow S, Reindl T et al (2011) End-of-life opioid administration on neonatal and pediatric intensive care units: nurses’ attitudes and practice. Eur J Pain 15(9):958–965PubMedCrossRef
Zurück zum Zitat Garten L, Rösner B, Klapp C et al (2013) Familienzentrierte Sterbe- und individuelle Trauerbegleitung an einem Perinatalzentrum. Z Geburtshilfe Neonatol 217(3):95–102PubMedCrossRef Garten L, Rösner B, Klapp C et al (2013) Familienzentrierte Sterbe- und individuelle Trauerbegleitung an einem Perinatalzentrum. Z Geburtshilfe Neonatol 217(3):95–102PubMedCrossRef
Zurück zum Zitat Garten L, Globisch M, von der Hude K et al (2018) Leitsätze für Palliativversorgung und Trauerbegleitung in der Peri-und Neonatologie, 1. Aufl. Bundesverband „Das frühgeborene Kind” e.V., Frankfurt am Main Garten L, Globisch M, von der Hude K et al (2018) Leitsätze für Palliativversorgung und Trauerbegleitung in der Peri-und Neonatologie, 1. Aufl. Bundesverband „Das frühgeborene Kind” e.V., Frankfurt am Main
Zurück zum Zitat Harlos MS, Stenekes S, Lambert D et al (2013) Intranasal fentanyl in the palliative care of newborns and infants. J Pain Symptom Manag 46(2):265–274CrossRef Harlos MS, Stenekes S, Lambert D et al (2013) Intranasal fentanyl in the palliative care of newborns and infants. J Pain Symptom Manag 46(2):265–274CrossRef
Zurück zum Zitat Hellmann J, Knighton R, Lee SK et al (2016) Neonatal deaths: prospective exploration of the causes and process of end-of-life decisions. Arch Dis Child Fetal Neonatal Ed 101(2):F102–F1F7PubMedCrossRef Hellmann J, Knighton R, Lee SK et al (2016) Neonatal deaths: prospective exploration of the causes and process of end-of-life decisions. Arch Dis Child Fetal Neonatal Ed 101(2):F102–F1F7PubMedCrossRef
Zurück zum Zitat Horridge KA (2015) Advance care planning: practicalities, legalities, complexities and controversies. Arch Dis Child 100(4):380–385PubMedCrossRef Horridge KA (2015) Advance care planning: practicalities, legalities, complexities and controversies. Arch Dis Child 100(4):380–385PubMedCrossRef
Zurück zum Zitat von der Hude K (2019) Grundlagen der Trauerbegleitung. In: Garten L, von der Hude K (Hrsg) Palliativversorgung und Trauerbegleitung in der Neonatologie. Springer, Berlin/Heidelberg von der Hude K (2019) Grundlagen der Trauerbegleitung. In: Garten L, von der Hude K (Hrsg) Palliativversorgung und Trauerbegleitung in der Neonatologie. Springer, Berlin/Heidelberg
Zurück zum Zitat Kenner C, Press J, Ryan D (2015) Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. J Perinatol 35(1):S19–S23PubMedPubMedCentralCrossRef Kenner C, Press J, Ryan D (2015) Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. J Perinatol 35(1):S19–S23PubMedPubMedCentralCrossRef
Zurück zum Zitat Kidszun A, Linebarger J, Walter JK et al (2016) What if the prenatal diagnosis of a lethal anomaly turns out to be wrong? Pediatrics 137(5):e20154514PubMedCrossRef Kidszun A, Linebarger J, Walter JK et al (2016) What if the prenatal diagnosis of a lethal anomaly turns out to be wrong? Pediatrics 137(5):e20154514PubMedCrossRef
Zurück zum Zitat Kochanek KD, Murphy SL, Xu J (2015) Deaths: final data for 2011. Natl Vital Stat Rep 63(3):1–120PubMed Kochanek KD, Murphy SL, Xu J (2015) Deaths: final data for 2011. Natl Vital Stat Rep 63(3):1–120PubMed
Zurück zum Zitat Kuhlen M, Höll JI, Sabir H et al (2016) Experiences in palliative home care of infants with life-limiting conditions. Eur J Pediatr 175(3):321–327PubMedCrossRef Kuhlen M, Höll JI, Sabir H et al (2016) Experiences in palliative home care of infants with life-limiting conditions. Eur J Pediatr 175(3):321–327PubMedCrossRef
Zurück zum Zitat Lammer K (2014) Erklärungen: Warum und worum wird getrauert? In: Trauer verstehen. Springer, Berlin/Heidelberg, S 31–70CrossRef Lammer K (2014) Erklärungen: Warum und worum wird getrauert? In: Trauer verstehen. Springer, Berlin/Heidelberg, S 31–70CrossRef
Zurück zum Zitat Lean RE, Rogers CE, Paul RA et al (2018) NICU hospitalization: long-term implications on parenting and child behaviors. Curr Treat Options Pediatr 4(1):49–69PubMedPubMedCentralCrossRef Lean RE, Rogers CE, Paul RA et al (2018) NICU hospitalization: long-term implications on parenting and child behaviors. Curr Treat Options Pediatr 4(1):49–69PubMedPubMedCentralCrossRef
Zurück zum Zitat Marc-Aurele KL, English NK (2017) Primary palliative care in neonatal intensive care. Semin Perinatol 41(2):133–9 Marc-Aurele KL, English NK (2017) Primary palliative care in neonatal intensive care. Semin Perinatol 41(2):133–9
Zurück zum Zitat Marsac ML, Kindler C, Weiss D et al (2018) Let’s talk about it: supporting family communication during end-of-life care of pediatric patients. J Palliat Med 21(6):862–878PubMedCrossRef Marsac ML, Kindler C, Weiss D et al (2018) Let’s talk about it: supporting family communication during end-of-life care of pediatric patients. J Palliat Med 21(6):862–878PubMedCrossRef
Zurück zum Zitat Marty CM, Carter BS (2018) Ethics and palliative care in the perinatal world. Semin Fetal Neonatal Med 23(1):35–38PubMedCrossRef Marty CM, Carter BS (2018) Ethics and palliative care in the perinatal world. Semin Fetal Neonatal Med 23(1):35–38PubMedCrossRef
Zurück zum Zitat Michelson KN, Koogler T, Sullivan C et al (2009) Parental views on withdrawing life-sustaining therapies in critically ill children. Arch Pediatr Adolesc Med 163(11):986–992PubMedPubMedCentralCrossRef Michelson KN, Koogler T, Sullivan C et al (2009) Parental views on withdrawing life-sustaining therapies in critically ill children. Arch Pediatr Adolesc Med 163(11):986–992PubMedPubMedCentralCrossRef
Zurück zum Zitat Murphy A, O’Sullivan R, Wakai A et al (2014) Intranasal fentanyl for the management of acute pain in children. Cochrane Database Syst Rev 10:CD009942 Murphy A, O’Sullivan R, Wakai A et al (2014) Intranasal fentanyl for the management of acute pain in children. Cochrane Database Syst Rev 10:CD009942
Zurück zum Zitat Nolte-Buchholtz S, Garten L (2018) Perinatale Palliativversorgung - Betreuung von Neugeborenen mit lebensverkürzenden Erkrankungen und ihrer Familien. Monatsschr Kinderheilk 166(12):1127–1142CrossRef Nolte-Buchholtz S, Garten L (2018) Perinatale Palliativversorgung - Betreuung von Neugeborenen mit lebensverkürzenden Erkrankungen und ihrer Familien. Monatsschr Kinderheilk 166(12):1127–1142CrossRef
Zurück zum Zitat October TW, Fisher KR, Feudtner C et al (2014) The parent perspective:“being a good parent” when making critical decisions in the PICU. Pediatr Crit Care Med 15(4):291–298PubMedPubMedCentralCrossRef October TW, Fisher KR, Feudtner C et al (2014) The parent perspective:“being a good parent” when making critical decisions in the PICU. Pediatr Crit Care Med 15(4):291–298PubMedPubMedCentralCrossRef
Zurück zum Zitat Pector EA (2004) Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death. J Perinatol 24(1):4–10PubMedCrossRef Pector EA (2004) Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death. J Perinatol 24(1):4–10PubMedCrossRef
Zurück zum Zitat Pillai Riddell RR, Racine NM, Gennis HG et al (2015) Non-pharmacological management of infant and young child procedural pain. Cochrane Database Syst Rev 12:CD006275 Pillai Riddell RR, Racine NM, Gennis HG et al (2015) Non-pharmacological management of infant and young child procedural pain. Cochrane Database Syst Rev 12:CD006275
Zurück zum Zitat Rellensmann G, Hasan C (2009) Empfehlungen zum Vorgehen in Notfallsituationen. Monatsschr Kinderheilk 157:38–42CrossRef Rellensmann G, Hasan C (2009) Empfehlungen zum Vorgehen in Notfallsituationen. Monatsschr Kinderheilk 157:38–42CrossRef
Zurück zum Zitat Soni R, Vasudevan C, English S (2011) A national survey of neonatal palliative care in the UK. Infant 7(5):162–163 Soni R, Vasudevan C, English S (2011) A national survey of neonatal palliative care in the UK. Infant 7(5):162–163
Zurück zum Zitat Stephens BE, Tucker R, Vohr BR (2010) Special health care needs of infants born at the limits of viability. Pediatrics 125(6):1152–1158PubMedCrossRef Stephens BE, Tucker R, Vohr BR (2010) Special health care needs of infants born at the limits of viability. Pediatrics 125(6):1152–1158PubMedCrossRef
Zurück zum Zitat Verhagen AE, Janvier A, Leuthner SR et al (2010) Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and the Netherlands. J Pediatr 156(1):33–37PubMedCrossRef Verhagen AE, Janvier A, Leuthner SR et al (2010) Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and the Netherlands. J Pediatr 156(1):33–37PubMedCrossRef
Zurück zum Zitat de Vos MA, Bos AP, Plötz FB et al (2015) Talking with parents about end-of-life decisions for their children. Pediatrics 135(2):e465–e476PubMedCrossRef de Vos MA, Bos AP, Plötz FB et al (2015) Talking with parents about end-of-life decisions for their children. Pediatrics 135(2):e465–e476PubMedCrossRef
Zurück zum Zitat Vrakking AM, van der Heide A, Onwuteaka-Philipsen BD et al (2005) Medical end-of-life decisions made for neonates and infants in the Netherlands, 1995–2001. Lancet 365(9467):1329–1331PubMedCrossRef Vrakking AM, van der Heide A, Onwuteaka-Philipsen BD et al (2005) Medical end-of-life decisions made for neonates and infants in the Netherlands, 1995–2001. Lancet 365(9467):1329–1331PubMedCrossRef
Zurück zum Zitat Wool C, Catlin A (2019) Perinatal bereavement and palliative care offered throughout the healthcare system. Ann Palliat Med 8(Suppl 1):S22–SS9PubMedCrossRef Wool C, Catlin A (2019) Perinatal bereavement and palliative care offered throughout the healthcare system. Ann Palliat Med 8(Suppl 1):S22–SS9PubMedCrossRef
Zurück zum Zitat Youngblut JM, Brooten D (2013) Parents’ report of child’s response to sibling’s death in a neonatal or pediatric intensive care unit. Am J Crit Care 22(6):474–481PubMedCrossRef Youngblut JM, Brooten D (2013) Parents’ report of child’s response to sibling’s death in a neonatal or pediatric intensive care unit. Am J Crit Care 22(6):474–481PubMedCrossRef
Zurück zum Zitat Zernikow B (Hrsg) (2021) Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle. Springer, Berlin/Heidelberg Zernikow B (Hrsg) (2021) Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle. Springer, Berlin/Heidelberg
Zurück zum Zitat Ahuja N, Zhao W, Xiang H (2012) Medical errors in US pediatric inpatients with chronic conditions. Pediatrics 130(4):e786–ee93PubMedCrossRef Ahuja N, Zhao W, Xiang H (2012) Medical errors in US pediatric inpatients with chronic conditions. Pediatrics 130(4):e786–ee93PubMedCrossRef
Zurück zum Zitat Aspesberro F, Mangione-Smith R, Zimmerman JJ (2015) Health-related quality of life following pediatric critical illness. Intensive Care Med 41(7):1235–1246PubMedCrossRef Aspesberro F, Mangione-Smith R, Zimmerman JJ (2015) Health-related quality of life following pediatric critical illness. Intensive Care Med 41(7):1235–1246PubMedCrossRef
Zurück zum Zitat Baker SC, Gledhill JA (2017) Systematic review of interventions to reduce psychiatric morbidity in parents and children after PICU admissions. Pediatr Crit Care Med 18(4):343–348PubMedCrossRef Baker SC, Gledhill JA (2017) Systematic review of interventions to reduce psychiatric morbidity in parents and children after PICU admissions. Pediatr Crit Care Med 18(4):343–348PubMedCrossRef
Zurück zum Zitat Bellali T, Papadatou D (2006) Parental grief following the brain death of a child: does consent or refusal to organ donation affect their grief? Death Stud 30(10):883–917PubMedCrossRef Bellali T, Papadatou D (2006) Parental grief following the brain death of a child: does consent or refusal to organ donation affect their grief? Death Stud 30(10):883–917PubMedCrossRef
Zurück zum Zitat Brandt SA, Angstwurm H (2018) Bedeutung des irreversiblen Hirnfunktionsausfalls als sicheres Todeszeichen. Dtsch Ärztebl 115(41):675–681 Brandt SA, Angstwurm H (2018) Bedeutung des irreversiblen Hirnfunktionsausfalls als sicheres Todeszeichen. Dtsch Ärztebl 115(41):675–681
Zurück zum Zitat Burns JP, Sellers DE, Meyer EC et al (2014) Epidemiology of death in the pediatric intensive care unit at five US teaching hospitals. Crit Care Med 42(9):2101PubMedPubMedCentralCrossRef Burns JP, Sellers DE, Meyer EC et al (2014) Epidemiology of death in the pediatric intensive care unit at five US teaching hospitals. Crit Care Med 42(9):2101PubMedPubMedCentralCrossRef
Zurück zum Zitat Cox PN (2018) Death and dying 1987–2017: The destination is the same, the journey is different. Pediatr Crit Care Med 19(8S):S55–SS6PubMedCrossRef Cox PN (2018) Death and dying 1987–2017: The destination is the same, the journey is different. Pediatr Crit Care Med 19(8S):S55–SS6PubMedCrossRef
Zurück zum Zitat Davidson JE, Jones C, Bienvenu OJ (2012) Family response to critical illness: Postintensive care syndrome–family. Crit Care Med 40(2):618–624PubMedCrossRef Davidson JE, Jones C, Bienvenu OJ (2012) Family response to critical illness: Postintensive care syndrome–family. Crit Care Med 40(2):618–624PubMedCrossRef
Zurück zum Zitat Davydow DS, Richardson LP, Zatzick DF et al (2010) Psychiatric morbidity in pediatric critical illness survivors: a comprehensive review of the literature. Arch Pediatr Adolesc Med 164(4):377–385PubMedPubMedCentralCrossRef Davydow DS, Richardson LP, Zatzick DF et al (2010) Psychiatric morbidity in pediatric critical illness survivors: a comprehensive review of the literature. Arch Pediatr Adolesc Med 164(4):377–385PubMedPubMedCentralCrossRef
Zurück zum Zitat Dechnik A, Traube C (2020) Delirium in hospitalised children. Lancet Child Adolesc Health 4(4):312–321PubMedCrossRef Dechnik A, Traube C (2020) Delirium in hospitalised children. Lancet Child Adolesc Health 4(4):312–321PubMedCrossRef
Zurück zum Zitat Devictor DJ, Latour JM, Group EIs (2011) Forgoing life support: how the decision is made in European pediatric intensive care units. Intensive Care Med 37(11):1881PubMedCrossRef Devictor DJ, Latour JM, Group EIs (2011) Forgoing life support: how the decision is made in European pediatric intensive care units. Intensive Care Med 37(11):1881PubMedCrossRef
Zurück zum Zitat Dryden-Palmer K, Haut C, Murphy S et al (2018) Logistics of withdrawal of life-sustaining therapies in PICU. Pediatr Crit Care Med 19(8S):S19–S25PubMedCrossRef Dryden-Palmer K, Haut C, Murphy S et al (2018) Logistics of withdrawal of life-sustaining therapies in PICU. Pediatr Crit Care Med 19(8S):S19–S25PubMedCrossRef
Zurück zum Zitat Edwards JD, Houtrow AJ, Vasilevskis EE et al (2012) Chronic conditions among children admitted to US pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay. Crit Care Med 40(7):2196–2203PubMedPubMedCentralCrossRef Edwards JD, Houtrow AJ, Vasilevskis EE et al (2012) Chronic conditions among children admitted to US pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay. Crit Care Med 40(7):2196–2203PubMedPubMedCentralCrossRef
Zurück zum Zitat Feudtner C, Feinstein JA, Zhong W et al (2014) Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr 14(1):199PubMedPubMedCentralCrossRef Feudtner C, Feinstein JA, Zhong W et al (2014) Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr 14(1):199PubMedPubMedCentralCrossRef
Zurück zum Zitat Fraser LK, Parslow R (2018) Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study. Arch Dis Child 103(6):540–547PubMedCrossRef Fraser LK, Parslow R (2018) Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study. Arch Dis Child 103(6):540–547PubMedCrossRef
Zurück zum Zitat Fraser LK, Miller M, Hain R et al (2012) Rising national prevalence of life-limiting conditions in children in england. Pediatrics 129(4):e923–e9e9PubMedCrossRef Fraser LK, Miller M, Hain R et al (2012) Rising national prevalence of life-limiting conditions in children in england. Pediatrics 129(4):e923–e9e9PubMedCrossRef
Zurück zum Zitat Garstang J, Griffiths F, Sidebotham P (2014) What do bereaved parents want from professionals after the sudden death of their child: a systematic review of the literature. BMC Pediatr 14(1):269PubMedPubMedCentralCrossRef Garstang J, Griffiths F, Sidebotham P (2014) What do bereaved parents want from professionals after the sudden death of their child: a systematic review of the literature. BMC Pediatr 14(1):269PubMedPubMedCentralCrossRef
Zurück zum Zitat van der Geest IM, Darlington A-SE, Streng IC et al (2014) Parents’ experiences of pediatric palliative care and the impact on long-term parental grief. J Pain Symptom Manag 47(6):1043–1053CrossRef van der Geest IM, Darlington A-SE, Streng IC et al (2014) Parents’ experiences of pediatric palliative care and the impact on long-term parental grief. J Pain Symptom Manag 47(6):1043–1053CrossRef
Zurück zum Zitat van der Geest IM, van den Heuvel-Eibrink MM, Falkenburg N et al (2015) Parents’ faith and hope during the pediatric palliative phase and the association with long-term parental adjustment. J Palliat Med 18(5):402–407PubMedCrossRef van der Geest IM, van den Heuvel-Eibrink MM, Falkenburg N et al (2015) Parents’ faith and hope during the pediatric palliative phase and the association with long-term parental adjustment. J Palliat Med 18(5):402–407PubMedCrossRef
Zurück zum Zitat Gilleland JC, Parshuram CS (2018) Discussing death as a possible outcome of PICU care. Pediatr Crit Care Med 19(8S):S4–S9PubMedCrossRef Gilleland JC, Parshuram CS (2018) Discussing death as a possible outcome of PICU care. Pediatr Crit Care Med 19(8S):S4–S9PubMedCrossRef
Zurück zum Zitat Heneghan JA, Pollack MM (2017) Morbidity: changing the outcome paradigm for pediatric critical care. Pediatr Clin 64(5):1147–1165 Heneghan JA, Pollack MM (2017) Morbidity: changing the outcome paradigm for pediatric critical care. Pediatr Clin 64(5):1147–1165
Zurück zum Zitat van den Heuvel I, Nolte-Buchholtz S, Rellensmann G (2019) Pädiatrische Intensiv-und Palliativmedizin–unsere Patienten brauchen beides! Intensivmedizin up2date 15(01):91–110 van den Heuvel I, Nolte-Buchholtz S, Rellensmann G (2019) Pädiatrische Intensiv-und Palliativmedizin–unsere Patienten brauchen beides! Intensivmedizin up2date 15(01):91–110
Zurück zum Zitat Hill DL, Carroll KW, Dougherty S et al (2014) Point prevalence study of pediatric inpatients who are unable to communicate effectively about pain. Hosp Pediatr 4(6):382–386PubMedCrossRef Hill DL, Carroll KW, Dougherty S et al (2014) Point prevalence study of pediatric inpatients who are unable to communicate effectively about pain. Hosp Pediatr 4(6):382–386PubMedCrossRef
Zurück zum Zitat Kang TI, Hynson J (2018) Compassionate discharges from the PICU. Pediatr Crit Care Med 19(8S):S41–SS7PubMedCrossRef Kang TI, Hynson J (2018) Compassionate discharges from the PICU. Pediatr Crit Care Med 19(8S):S41–SS7PubMedCrossRef
Zurück zum Zitat Koch KD, Jones BL (2018) Supporting parent caregivers of children with life-limiting illness. Children (Basel, Switzerland) 5(7) Koch KD, Jones BL (2018) Supporting parent caregivers of children with life-limiting illness. Children (Basel, Switzerland) 5(7)
Zurück zum Zitat Kreicbergs U, Valdimarsdottir U, Onelöv E et al (2004) Talking about death with children who have severe malignant disease. N Engl J Med 351(12):1175–1186PubMedCrossRef Kreicbergs U, Valdimarsdottir U, Onelöv E et al (2004) Talking about death with children who have severe malignant disease. N Engl J Med 351(12):1175–1186PubMedCrossRef
Zurück zum Zitat LaFond CM, Hanrahan KS, Pierce NL et al (2019) Pain in the pediatric intensive care unit: How and what are we doing? Am J Crit Care 28(4):265–273PubMedCrossRef LaFond CM, Hanrahan KS, Pierce NL et al (2019) Pain in the pediatric intensive care unit: How and what are we doing? Am J Crit Care 28(4):265–273PubMedCrossRef
Zurück zum Zitat Lopes-Júnior LC, Rosa MAdRd, Lima RAGd (2018) Psychological and psychiatric outcomes following PICU admission: a systematic review of cohort studies. Pediatr Crit Care Med 19(1):e58–e67 Lopes-Júnior LC, Rosa MAdRd, Lima RAGd (2018) Psychological and psychiatric outcomes following PICU admission: a systematic review of cohort studies. Pediatr Crit Care Med 19(1):e58–e67
Zurück zum Zitat Luberda K, Cleaver K (2017) How modifiable factors influence parental decision-making about organ donation. Nurs Child Young People 29(9):29PubMedCrossRef Luberda K, Cleaver K (2017) How modifiable factors influence parental decision-making about organ donation. Nurs Child Young People 29(9):29PubMedCrossRef
Zurück zum Zitat Marsac ML, Kindler C, Weiss D et al (2018) Let’s talk about it: supporting family communication during end-of-life care of pediatric patients. J Palliat Med 21(6):862–78 Marsac ML, Kindler C, Weiss D et al (2018) Let’s talk about it: supporting family communication during end-of-life care of pediatric patients. J Palliat Med 21(6):862–78
Zurück zum Zitat McAlvin SS, Carew-Lyons A (2014) Family presence during resuscitation and invasive procedures in pediatric critical care: a systematic review. Am J Crit Care 23(6):477–485PubMedCrossRef McAlvin SS, Carew-Lyons A (2014) Family presence during resuscitation and invasive procedures in pediatric critical care: a systematic review. Am J Crit Care 23(6):477–485PubMedCrossRef
Zurück zum Zitat Meert KL, Donaldson A, Nadkarni V et al (2009) Multicenter cohort study of in-hospital pediatric cardiac arrest. Pediatr Crit Care Med 10(5):544–553PubMedPubMedCentralCrossRef Meert KL, Donaldson A, Nadkarni V et al (2009) Multicenter cohort study of in-hospital pediatric cardiac arrest. Pediatr Crit Care Med 10(5):544–553PubMedPubMedCentralCrossRef
Zurück zum Zitat Meert KL, Donaldson AE, Newth CJ et al (2010) Complicated grief and associated risk factors among parents following a child’s death in the pediatric intensive care unit. Arch Pediatr Adolesc Med 164(11):1045–1051PubMedPubMedCentralCrossRef Meert KL, Donaldson AE, Newth CJ et al (2010) Complicated grief and associated risk factors among parents following a child’s death in the pediatric intensive care unit. Arch Pediatr Adolesc Med 164(11):1045–1051PubMedPubMedCentralCrossRef
Zurück zum Zitat Meert KL, Shear K, Newth CJL et al (2011) Follow-up study of complicated grief among parents eighteen months after a child’s death in the pediatric intensive care unit. J Palliat Med 14(2):207–214PubMedPubMedCentralCrossRef Meert KL, Shear K, Newth CJL et al (2011) Follow-up study of complicated grief among parents eighteen months after a child’s death in the pediatric intensive care unit. J Palliat Med 14(2):207–214PubMedPubMedCentralCrossRef
Zurück zum Zitat Meyer EC, Ritholz MD, Burns JP et al (2006) Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics 117(3):649–657PubMedCrossRef Meyer EC, Ritholz MD, Burns JP et al (2006) Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics 117(3):649–657PubMedCrossRef
Zurück zum Zitat Morris S, Fletcher K, Goldstein R (2019) The grief of parents after the death of a young child. J Clin Psychol Med Settings 26(3):321–338PubMedCrossRef Morris S, Fletcher K, Goldstein R (2019) The grief of parents after the death of a young child. J Clin Psychol Med Settings 26(3):321–338PubMedCrossRef
Zurück zum Zitat Nakagawa TA, Shemie SD, Dryden-Palmer K et al (2018) Organ donation following neurologic and circulatory determination of death. Pediatr Crit Care Med 19(8S):S26–S32PubMedCrossRef Nakagawa TA, Shemie SD, Dryden-Palmer K et al (2018) Organ donation following neurologic and circulatory determination of death. Pediatr Crit Care Med 19(8S):S26–S32PubMedCrossRef
Zurück zum Zitat Nyborn JA, Olcese M, Nickerson T et al (2016) „Don’t try to cover the sky with your hands“: parents’ experiences with prognosis communication about their children with advanced cancer. J Palliat Med 19(6):626–631PubMedCrossRef Nyborn JA, Olcese M, Nickerson T et al (2016) „Don’t try to cover the sky with your hands“: parents’ experiences with prognosis communication about their children with advanced cancer. J Palliat Med 19(6):626–631PubMedCrossRef
Zurück zum Zitat October T, Dryden-Palmer K, Copnell B et al (2018) Caring for parents after the death of a child. Pediatr Crit Care Med 19(8):S61 October T, Dryden-Palmer K, Copnell B et al (2018) Caring for parents after the death of a child. Pediatr Crit Care Med 19(8):S61
Zurück zum Zitat Peeler K, Wolfe J (2018) Pediatric unexpected death: examination of a unique population and its end-of-life care management (S741). J Pain Symptom Manag 55(2):679CrossRef Peeler K, Wolfe J (2018) Pediatric unexpected death: examination of a unique population and its end-of-life care management (S741). J Pain Symptom Manag 55(2):679CrossRef
Zurück zum Zitat Pinto NP, Rhinesmith EW, Kim TY et al (2017) Long-term function after pediatric critical illness: results from the survivor outcomes study. Pediatr Crit Care Med 18(3):e122–ee30PubMedCrossRef Pinto NP, Rhinesmith EW, Kim TY et al (2017) Long-term function after pediatric critical illness: results from the survivor outcomes study. Pediatr Crit Care Med 18(3):e122–ee30PubMedCrossRef
Zurück zum Zitat Pollack MM, Holubkov R, Funai T et al (2015) Simultaneous prediction of new morbidity, mortality, and survival without new morbidity from pediatric intensive care: a new paradigm for outcomes assessment. Crit Care Med 43(8):1699PubMedPubMedCentralCrossRef Pollack MM, Holubkov R, Funai T et al (2015) Simultaneous prediction of new morbidity, mortality, and survival without new morbidity from pediatric intensive care: a new paradigm for outcomes assessment. Crit Care Med 43(8):1699PubMedPubMedCentralCrossRef
Zurück zum Zitat Puntillo K, Nelson JE, Weissman D et al (2014) Palliative care in the ICU: relief of pain, dyspnea, and thirst – a report from the IPAL-ICU Advisory Board. Intensive Care Med 40(2):235–248PubMedCrossRef Puntillo K, Nelson JE, Weissman D et al (2014) Palliative care in the ICU: relief of pain, dyspnea, and thirst – a report from the IPAL-ICU Advisory Board. Intensive Care Med 40(2):235–248PubMedCrossRef
Zurück zum Zitat Rellensmann G, Laumann K, Gillner J et al (2014) Anwesenheit der Eltern bei Notfallsituationen in der Pädiatrie. Monatsschr Kinderheilk 162(1):70–74CrossRef Rellensmann G, Laumann K, Gillner J et al (2014) Anwesenheit der Eltern bei Notfallsituationen in der Pädiatrie. Monatsschr Kinderheilk 162(1):70–74CrossRef
Zurück zum Zitat Rennick JE, St-Sauveur I, Knox AM et al (2019) Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study. BMC Pediatr 19(1):272PubMedPubMedCentralCrossRef Rennick JE, St-Sauveur I, Knox AM et al (2019) Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study. BMC Pediatr 19(1):272PubMedPubMedCentralCrossRef
Zurück zum Zitat Rosenberg AR, Wolfe J, Wiener L et al (2016) Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: a review. JAMA Pediatr 170(12):1216–1223PubMedPubMedCentralCrossRef Rosenberg AR, Wolfe J, Wiener L et al (2016) Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: a review. JAMA Pediatr 170(12):1216–1223PubMedPubMedCentralCrossRef
Zurück zum Zitat Schöne-Seifert B (2014) Hirntod: Ja aber⋯. In: Ach JS, Lüttenberg B, Quante M (Hrsg) wissen · leben · ethik Themen und Positionen der Bioethik. Mentis, Münster, S 67–77 Schöne-Seifert B (2014) Hirntod: Ja aber⋯. In: Ach JS, Lüttenberg B, Quante M (Hrsg) wissen · leben · ethik Themen und Positionen der Bioethik. Mentis, Münster, S 67–77
Zurück zum Zitat Schöne-Seifert B, Prien T, Rellensmann G et al (2011) Medizinethik: Behandlung potenzieller Organspender im Präfinalstadium. Dtsch Arztebl 108(40):A 2080/B-1770/C-53 Schöne-Seifert B, Prien T, Rellensmann G et al (2011) Medizinethik: Behandlung potenzieller Organspender im Präfinalstadium. Dtsch Arztebl 108(40):A 2080/B-1770/C-53
Zurück zum Zitat Shewmon DA (2009) Brain death: can it be resuscitated? Hast Cent Rep 39(2):18–24CrossRef Shewmon DA (2009) Brain death: can it be resuscitated? Hast Cent Rep 39(2):18–24CrossRef
Zurück zum Zitat Sidgwick P, Fraser J, Fortune P-M et al (2019) Parallel planning and the paediatric critical care patient. Arch Dis Child 104:994–997PubMedCrossRef Sidgwick P, Fraser J, Fortune P-M et al (2019) Parallel planning and the paediatric critical care patient. Arch Dis Child 104:994–997PubMedCrossRef
Zurück zum Zitat Silver GH, Kearney JA, Bora S et al (2019) A clinical pathway to standardize care of children with delirium in pediatric inpatient settings. Hosp Pediatr 9(11):909–916PubMedCrossRef Silver GH, Kearney JA, Bora S et al (2019) A clinical pathway to standardize care of children with delirium in pediatric inpatient settings. Hosp Pediatr 9(11):909–916PubMedCrossRef
Zurück zum Zitat Sisk BA, Mack JW, Ashworth R et al (2018) Communication in pediatric oncology: state of the field and research agenda. Pediatr Blood Cancer 65(1):e26727CrossRef Sisk BA, Mack JW, Ashworth R et al (2018) Communication in pediatric oncology: state of the field and research agenda. Pediatr Blood Cancer 65(1):e26727CrossRef
Zurück zum Zitat Stoecker R (2014) Zwischen Leben und Tod. In: Ach JS, Lüttenberg B, Quante M (eds) wissen · leben · ethik. Themen und Positionen der Bioethik. Mentis, Münster, S 79–90 Stoecker R (2014) Zwischen Leben und Tod. In: Ach JS, Lüttenberg B, Quante M (eds) wissen · leben · ethik. Themen und Positionen der Bioethik. Mentis, Münster, S 79–90
Zurück zum Zitat Traube C, Silver G, Reeder RW et al (2017) Pediatric delirium in critically-ill children: an international point prevalence study. Crit Care Med 45(4):584PubMedPubMedCentralCrossRef Traube C, Silver G, Reeder RW et al (2017) Pediatric delirium in critically-ill children: an international point prevalence study. Crit Care Med 45(4):584PubMedPubMedCentralCrossRef
Zurück zum Zitat Trowbridge A, Walter JK, McConathey E et al (2018) Modes of death within a children’s hospital. Pediatrics 142(4):e20174182 Trowbridge A, Walter JK, McConathey E et al (2018) Modes of death within a children’s hospital. Pediatrics 142(4):e20174182
Zurück zum Zitat Weiss A, Fortinsky R, Laughlin J et al (1997) Parental consent for pediatric cadaveric organ donation. Transplant Proc 29(3):1896–1901PubMedCrossRef Weiss A, Fortinsky R, Laughlin J et al (1997) Parental consent for pediatric cadaveric organ donation. Transplant Proc 29(3):1896–1901PubMedCrossRef
Zurück zum Zitat Yagiela LM, Carlton EF, Meert KL et al (2019) Parent medical traumatic stress and associated family outcomes after pediatric critical illness: A systematic review. Pediatr Crit Care Med 20(8):759–768PubMedCrossRef Yagiela LM, Carlton EF, Meert KL et al (2019) Parent medical traumatic stress and associated family outcomes after pediatric critical illness: A systematic review. Pediatr Crit Care Med 20(8):759–768PubMedCrossRef
Zurück zum Zitat Youngblut JM, Brooten D, Cantwell GP et al (2013) Parent health and functioning 13 months after infant or child NICU/PICU death. Pediatrics 132(5):e1295–ee301PubMedPubMedCentralCrossRef Youngblut JM, Brooten D, Cantwell GP et al (2013) Parent health and functioning 13 months after infant or child NICU/PICU death. Pediatrics 132(5):e1295–ee301PubMedPubMedCentralCrossRef
Zurück zum Zitat Allen J, Molloy E, McDonald D (2020) Severe neurological impairment: a review of the definition. Dev Med Child Neurol 62(3):277–282PubMedCrossRef Allen J, Molloy E, McDonald D (2020) Severe neurological impairment: a review of the definition. Dev Med Child Neurol 62(3):277–282PubMedCrossRef
Zurück zum Zitat Andrews JG, Wahl RA (2018) Duchenne and Becker muscular dystrophy in adolescents: current perspectives. Adolesc Health Med Ther 9:53PubMedPubMedCentral Andrews JG, Wahl RA (2018) Duchenne and Becker muscular dystrophy in adolescents: current perspectives. Adolesc Health Med Ther 9:53PubMedPubMedCentral
Zurück zum Zitat Biermann A, Goetze H (2005) Sonderpädagogik. Eine Einführung. Kohlhammer, Stuttgart Biermann A, Goetze H (2005) Sonderpädagogik. Eine Einführung. Kohlhammer, Stuttgart
Zurück zum Zitat Borchert J (2007) Einführung in die Sonderpädagogik. Oldenbourg Wissenschaftsverlag, MünchenCrossRef Borchert J (2007) Einführung in die Sonderpädagogik. Oldenbourg Wissenschaftsverlag, MünchenCrossRef
Zurück zum Zitat Braun U (1996) Unterstützte Kommunikation. Selbst bestimmmtes Leben, Düsseldorf Braun U (1996) Unterstützte Kommunikation. Selbst bestimmmtes Leben, Düsseldorf
Zurück zum Zitat Breau LM, Camfield CS, McGrath PJ et al (2003) The incidence of pain in children with severe cognitive impairments. Arch Pediatr Adolesc Med 157(12):1219–1226PubMedCrossRef Breau LM, Camfield CS, McGrath PJ et al (2003) The incidence of pain in children with severe cognitive impairments. Arch Pediatr Adolesc Med 157(12):1219–1226PubMedCrossRef
Zurück zum Zitat Brown A, Clark JD (2015) A parent’s journey: incorporating principles of palliative care into practice for children with chronic neurologic diseases. Semin Pediatr Neurol 22(3):159–165PubMedCrossRef Brown A, Clark JD (2015) A parent’s journey: incorporating principles of palliative care into practice for children with chronic neurologic diseases. Semin Pediatr Neurol 22(3):159–165PubMedCrossRef
Zurück zum Zitat Chiriboga CA (2017) Nusinersen for the treatment of spinal muscular atrophy. Expert Rev Neurother 17(10):955–962PubMedCrossRef Chiriboga CA (2017) Nusinersen for the treatment of spinal muscular atrophy. Expert Rev Neurother 17(10):955–962PubMedCrossRef
Zurück zum Zitat De Vivo DC, Bertini E, Swoboda KJ et al (2019) Nusinersen initiated in infants during the presymptomatic stage of spinal muscular atrophy: Interim efficacy and safety results from the Phase 2 NURTURE study. Neuromuscul Disord 29(11):842–856PubMedPubMedCentralCrossRef De Vivo DC, Bertini E, Swoboda KJ et al (2019) Nusinersen initiated in infants during the presymptomatic stage of spinal muscular atrophy: Interim efficacy and safety results from the Phase 2 NURTURE study. Neuromuscul Disord 29(11):842–856PubMedPubMedCentralCrossRef
Zurück zum Zitat DIMDI (2011) ICF-CY: Internationale Klassifikation der Funktionsfähigkeit, Behinderung und Gesundheit bei Kindern und Jugendlichen. Huber, Bern DIMDI (2011) ICF-CY: Internationale Klassifikation der Funktionsfähigkeit, Behinderung und Gesundheit bei Kindern und Jugendlichen. Huber, Bern
Zurück zum Zitat Drake R, Frost J, Collins JJ (2003) The symptoms of dying children. J Pain Symptom Manag 26(1):594–603CrossRef Drake R, Frost J, Collins JJ (2003) The symptoms of dying children. J Pain Symptom Manag 26(1):594–603CrossRef
Zurück zum Zitat Droege M, Sproule D, Arjunji R et al (2020) Economic burden of spinal muscular atrophy in the United States: a contemporary assessment. J Med Econ 23(1):70–79PubMedCrossRef Droege M, Sproule D, Arjunji R et al (2020) Economic burden of spinal muscular atrophy in the United States: a contemporary assessment. J Med Econ 23(1):70–79PubMedCrossRef
Zurück zum Zitat Duque JAP, Ferreira CF, Zachia SA et al (2019) The natural history of pregnancies with prenatal diagnosis of Trisomy 18 or Trisomy 13: Retrospective cases of a 23-year experience in a Brazilian public hospital. Genet Mol Biol 42(1):286–296PubMedPubMedCentralCrossRef Duque JAP, Ferreira CF, Zachia SA et al (2019) The natural history of pregnancies with prenatal diagnosis of Trisomy 18 or Trisomy 13: Retrospective cases of a 23-year experience in a Brazilian public hospital. Genet Mol Biol 42(1):286–296PubMedPubMedCentralCrossRef
Zurück zum Zitat Faulkner KW, Thayer PB, Coulter DL (2005) Neurological and neuromuscular symptoms. In: Goldman A, Hain R, Liben S (Hrsg) Oxford textbook of palliative care for children. Oxford University Press, Oxford Faulkner KW, Thayer PB, Coulter DL (2005) Neurological and neuromuscular symptoms. In: Goldman A, Hain R, Liben S (Hrsg) Oxford textbook of palliative care for children. Oxford University Press, Oxford
Zurück zum Zitat Finkel RS, Mercuri E, Darras BT et al (2017) Nusinersen versus sham control in infantile-onset spinal muscular atrophy. N Engl J Med 377:1723–1732PubMedCrossRef Finkel RS, Mercuri E, Darras BT et al (2017) Nusinersen versus sham control in infantile-onset spinal muscular atrophy. N Engl J Med 377:1723–1732PubMedCrossRef
Zurück zum Zitat Fornefeld B (2008) Menschen mit Komplexer Behinderung. Selbstverständnis und Aufgaben der Behindertenpädagogik. Reinhardt, München Fornefeld B (2008) Menschen mit Komplexer Behinderung. Selbstverständnis und Aufgaben der Behindertenpädagogik. Reinhardt, München
Zurück zum Zitat Fröhlich A, Simon A (2004) Gemeinsamkeiten entdecken. Verlag selbstbestimmtes Leben, Düsseldorf Fröhlich A, Simon A (2004) Gemeinsamkeiten entdecken. Verlag selbstbestimmtes Leben, Düsseldorf
Zurück zum Zitat Hedderich I (2006) Unterstütze Kommunikation in der Frühförderung: Grundlagen - Diagnostik - Beispiele. Klinkhardt, Bad Heilbrunn Hedderich I (2006) Unterstütze Kommunikation in der Frühförderung: Grundlagen - Diagnostik - Beispiele. Klinkhardt, Bad Heilbrunn
Zurück zum Zitat Hunt A, Burne R (1995) Medical and nursing problems of children with neurodegenerative disease. Palliat Med 9(1):19PubMedCrossRef Hunt A, Burne R (1995) Medical and nursing problems of children with neurodegenerative disease. Palliat Med 9(1):19PubMedCrossRef
Zurück zum Zitat Janvier A, Farlow B, Wilfond BS (2012) The Experience of Families With Children With Trisomy 13 and 18 in Social Networks. Pediatrics 130(2):293–298PubMedCrossRef Janvier A, Farlow B, Wilfond BS (2012) The Experience of Families With Children With Trisomy 13 and 18 in Social Networks. Pediatrics 130(2):293–298PubMedCrossRef
Zurück zum Zitat Janvier A, Farlow B, Barrington KJ (2016) Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet C: Semin Med Genet 172(3):279–287CrossRef Janvier A, Farlow B, Barrington KJ (2016) Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet C: Semin Med Genet 172(3):279–287CrossRef
Zurück zum Zitat Kim J-K, Jha NN, Feng Z et al (2020) Muscle-specific SMN reduction reveals motor neuron–independent disease in spinal muscular atrophy models. J Clin Invest 130(3):1271–1287PubMedPubMedCentralCrossRef Kim J-K, Jha NN, Feng Z et al (2020) Muscle-specific SMN reduction reveals motor neuron–independent disease in spinal muscular atrophy models. J Clin Invest 130(3):1271–1287PubMedPubMedCentralCrossRef
Zurück zum Zitat Leuthner SR, Acharya K (2020) Perinatal counseling following a diagnosis of trisomy 13 or 18: incorporating the facts, parental values, and maintaining choices. Adv Neonatal Care 20(3):204–215PubMedCrossRef Leuthner SR, Acharya K (2020) Perinatal counseling following a diagnosis of trisomy 13 or 18: incorporating the facts, parental values, and maintaining choices. Adv Neonatal Care 20(3):204–215PubMedCrossRef
Zurück zum Zitat Malcolm C, Hain R, Gibson F et al (2012) Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families. Acta Paediatr 101(9):985–992PubMedCrossRef Malcolm C, Hain R, Gibson F et al (2012) Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families. Acta Paediatr 101(9):985–992PubMedCrossRef
Zurück zum Zitat McDonald CM, Sajeev G, Yao Z et al (2020) Deflazacort vs prednisone treatment for Duchenne muscular dystrophy: A meta-analysis of disease progression rates in recent multicenter clinical trials. Muscle Nerve 61(1):26–35PubMedCrossRef McDonald CM, Sajeev G, Yao Z et al (2020) Deflazacort vs prednisone treatment for Duchenne muscular dystrophy: A meta-analysis of disease progression rates in recent multicenter clinical trials. Muscle Nerve 61(1):26–35PubMedCrossRef
Zurück zum Zitat Meyer RE, Liu G, Gilboa SM et al (2016) Survival of children with trisomy 13 and trisomy 18: A multi-state population-based study. Am J Med Genet A 170(4):825–837CrossRef Meyer RE, Liu G, Gilboa SM et al (2016) Survival of children with trisomy 13 and trisomy 18: A multi-state population-based study. Am J Med Genet A 170(4):825–837CrossRef
Zurück zum Zitat Neubauer K, Boss RD (2020) Ethical considerations for cardiac surgical interventions in children with trisomy 13 and trisomy 18. Am J Med Genet C: Semin Med Genet 184(1):187–191CrossRef Neubauer K, Boss RD (2020) Ethical considerations for cardiac surgical interventions in children with trisomy 13 and trisomy 18. Am J Med Genet C: Semin Med Genet 184(1):187–191CrossRef
Zurück zum Zitat Pechmann A, Baumann M, Bernert G et al (2020) Treatment with nusinersen–challenges regarding the indication for children with SMA Type 1. J Neuromuscul Dis 7(1):41–46PubMedCrossRef Pechmann A, Baumann M, Bernert G et al (2020) Treatment with nusinersen–challenges regarding the indication for children with SMA Type 1. J Neuromuscul Dis 7(1):41–46PubMedCrossRef
Zurück zum Zitat Peterson R, Calamur N, Fiore A et al (2018) Factors influencing outcomes after cardiac intervention in infants with trisomy 13 and 18. Pediatr Cardiol 39(1):140–147PubMedCrossRef Peterson R, Calamur N, Fiore A et al (2018) Factors influencing outcomes after cardiac intervention in infants with trisomy 13 and 18. Pediatr Cardiol 39(1):140–147PubMedCrossRef
Zurück zum Zitat Polido GJ, Miranda MMVd, Carvas Junior N et al (2019) Cognitive performance of children with spinal muscular atrophy: a systematic review. Dement Neuropsychol 13(4):436–443 Polido GJ, Miranda MMVd, Carvas Junior N et al (2019) Cognitive performance of children with spinal muscular atrophy: a systematic review. Dement Neuropsychol 13(4):436–443
Zurück zum Zitat Sansone VA, Pirola A, Albamonte E et al (2020) Respiratory needs in patients with type 1 spinal muscular atrophy treated with nusinersen. J Pediatr 219:223-8.e4 Sansone VA, Pirola A, Albamonte E et al (2020) Respiratory needs in patients with type 1 spinal muscular atrophy treated with nusinersen. J Pediatr 219:223-8.e4
Zurück zum Zitat Schlack HG, Thyen U, von Kries R (2009) Sozialpädiatrie. Gesundheitswissenschaft und pädiatrischer Alltag. Springer, Heidelberg Schlack HG, Thyen U, von Kries R (2009) Sozialpädiatrie. Gesundheitswissenschaft und pädiatrischer Alltag. Springer, Heidelberg
Zurück zum Zitat Schmidt-Ohlemann M (2005) Mehrfachbehinderungen bei Kindern und Jugendlichen. In: Bundesarbeitsgemeinschaft für Rehabilitation (Hrsg) Rehabilitation und Teilhabe. Wegweiser für Ärzte und andere Fachkräfte der Rehabilitation. Deutscher Ärzteverlag, Köln Schmidt-Ohlemann M (2005) Mehrfachbehinderungen bei Kindern und Jugendlichen. In: Bundesarbeitsgemeinschaft für Rehabilitation (Hrsg) Rehabilitation und Teilhabe. Wegweiser für Ärzte und andere Fachkräfte der Rehabilitation. Deutscher Ärzteverlag, Köln
Zurück zum Zitat Schuntermann MF (2009) Einführung in die ICF (Grundkurs - Übungen - offene Fragen). ecomed MEDIZIN, Hamburg Schuntermann MF (2009) Einführung in die ICF (Grundkurs - Übungen - offene Fragen). ecomed MEDIZIN, Hamburg
Zurück zum Zitat Shorrock HK, Gillingwater TH, Groen EJ (2018) Overview of current drugs and molecules in development for spinal muscular atrophy therapy. Drugs 78(3):293–305PubMedPubMedCentralCrossRef Shorrock HK, Gillingwater TH, Groen EJ (2018) Overview of current drugs and molecules in development for spinal muscular atrophy therapy. Drugs 78(3):293–305PubMedPubMedCentralCrossRef
Zurück zum Zitat Speck O, Thalhammer M (1974) Die Rehabilitation der Geistigbehinderten - Ein Beitrag zur sozialen Integration. Ernst Reinhardt, München/Basel Speck O, Thalhammer M (1974) Die Rehabilitation der Geistigbehinderten - Ein Beitrag zur sozialen Integration. Ernst Reinhardt, München/Basel
Zurück zum Zitat Tietze AL, Blankenburg M, Hechler T et al (2012) Sleep disturbances in children with multiple disabilities. Sleep Med Rev 16(2):117–127PubMedCrossRef Tietze AL, Blankenburg M, Hechler T et al (2012) Sleep disturbances in children with multiple disabilities. Sleep Med Rev 16(2):117–127PubMedCrossRef
Zurück zum Zitat Vill K, Kölbel H, Schwartz O et al (2019) One year of newborn screening for SMA–Results of a German pilot project. J Neuromuscul Dis 6(4):503–515PubMedPubMedCentralCrossRef Vill K, Kölbel H, Schwartz O et al (2019) One year of newborn screening for SMA–Results of a German pilot project. J Neuromuscul Dis 6(4):503–515PubMedPubMedCentralCrossRef
Zurück zum Zitat Wadman RI, van der Pol WL, Bosboom WMJ et al (2019) Drug treatment for spinal muscular atrophy type I. Cochrane Database Syst Rev(12):CD006281.pub5 Wadman RI, van der Pol WL, Bosboom WMJ et al (2019) Drug treatment for spinal muscular atrophy type I. Cochrane Database Syst Rev(12):CD006281.pub5
Zurück zum Zitat Wadman RI, van der Pol WL, Bosboom WM et al (2020) Drug treatment for spinal muscular atrophy types II and III. Cochrane Database Syst Rev 1:CD006282PubMed Wadman RI, van der Pol WL, Bosboom WM et al (2020) Drug treatment for spinal muscular atrophy types II and III. Cochrane Database Syst Rev 1:CD006282PubMed
Zurück zum Zitat World Health Organization (WHO) (2001) International classification of functioning, disability and health (ICF). WHO, Genf World Health Organization (WHO) (2001) International classification of functioning, disability and health (ICF). WHO, Genf
Zurück zum Zitat Zernikow B (2007) Palliativmedizin bei genetischen Erkrankungen der Kindheit. In: Nauck F, Radbruch L, Aulbert E (Hrsg) Lehrbuch der Palliativmedizin. Schattauer, Stuttgart/New York Zernikow B (2007) Palliativmedizin bei genetischen Erkrankungen der Kindheit. In: Nauck F, Radbruch L, Aulbert E (Hrsg) Lehrbuch der Palliativmedizin. Schattauer, Stuttgart/New York
Zurück zum Zitat Zernikow B (Hrsg) (2021) Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle. Springer, Berlin/Heidelberg Zernikow B (Hrsg) (2021) Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle. Springer, Berlin/Heidelberg
Zurück zum Zitat Andres AM, Thompson J, Grant W et al (2008) Repeat surgical bowel lengthening with the STEP procedure. Transplantation 85(9):1294–1299PubMedCrossRef Andres AM, Thompson J, Grant W et al (2008) Repeat surgical bowel lengthening with the STEP procedure. Transplantation 85(9):1294–1299PubMedCrossRef
Zurück zum Zitat Beath SV, Davies P, Papadopoulou A et al (1996) Parenteral nutrition-related cholestasis in postsurgical neonates: multivariate analysis of risk factors. J Pediatr Surg 31(4):604–606PubMedCrossRef Beath SV, Davies P, Papadopoulou A et al (1996) Parenteral nutrition-related cholestasis in postsurgical neonates: multivariate analysis of risk factors. J Pediatr Surg 31(4):604–606PubMedCrossRef
Zurück zum Zitat Blaszyk H, Wild PJ, Oliveira A et al (2005) Hepatic copper in patients receiving long-term total parenteral nutrition. J Clin Gastroenterol 39(4):318–320PubMedCrossRef Blaszyk H, Wild PJ, Oliveira A et al (2005) Hepatic copper in patients receiving long-term total parenteral nutrition. J Clin Gastroenterol 39(4):318–320PubMedCrossRef
Zurück zum Zitat Bongaerts G, Bakkeren J, Severijnen R et al (2000) Lactobacilli and acidosis in children with short small bowel. J Pediatr Gastroenterol Nutr 30(3):288–293PubMedCrossRef Bongaerts G, Bakkeren J, Severijnen R et al (2000) Lactobacilli and acidosis in children with short small bowel. J Pediatr Gastroenterol Nutr 30(3):288–293PubMedCrossRef
Zurück zum Zitat Buchman AL, Fryer J, Wallin A et al (2006) Clonidine reduces diarrhea and sodium loss in patients with proximal jejunostomy: a controlled study. JPEN J Parenter Enteral Nutr 30(6):487–491PubMedCrossRef Buchman AL, Fryer J, Wallin A et al (2006) Clonidine reduces diarrhea and sodium loss in patients with proximal jejunostomy: a controlled study. JPEN J Parenter Enteral Nutr 30(6):487–491PubMedCrossRef
Zurück zum Zitat Carter BA, Cohran VC, Cole CR et al (2017) Outcomes from a 12-Week, Open-Label, Multicenter Clinical Trial of Teduglutide in Pediatric Short Bowel Syndrome. J Pediatr 181:102–111PubMedCrossRef Carter BA, Cohran VC, Cole CR et al (2017) Outcomes from a 12-Week, Open-Label, Multicenter Clinical Trial of Teduglutide in Pediatric Short Bowel Syndrome. J Pediatr 181:102–111PubMedCrossRef
Zurück zum Zitat Cavicchi M, Beau P, Crenn P et al (2000) Prevalence of liver disease and contributing factors in patients receiving home parenteral nutrition for permanent intestinal failure. Ann Intern Med 132(7):525–532PubMedCrossRef Cavicchi M, Beau P, Crenn P et al (2000) Prevalence of liver disease and contributing factors in patients receiving home parenteral nutrition for permanent intestinal failure. Ann Intern Med 132(7):525–532PubMedCrossRef
Zurück zum Zitat Christensen RD, Henry E, Wiedmeier SE et al (2007) Identifying patients, on the first day of life, at high-risk of developing parenteral nutrition-associated liver disease. J Perinatol 27(5):284–290PubMedCrossRef Christensen RD, Henry E, Wiedmeier SE et al (2007) Identifying patients, on the first day of life, at high-risk of developing parenteral nutrition-associated liver disease. J Perinatol 27(5):284–290PubMedCrossRef
Zurück zum Zitat Clayton PT, Whitfield P, Iyer K (1998) The role of phytosterols in the pathogenesis of liver complications of pediatric parenteral nutrition. Nutrition 14(1):158–164PubMedCrossRef Clayton PT, Whitfield P, Iyer K (1998) The role of phytosterols in the pathogenesis of liver complications of pediatric parenteral nutrition. Nutrition 14(1):158–164PubMedCrossRef
Zurück zum Zitat Cooper A, Floyd TF, Ross AJ et al (1984) Morbidity and mortality of short-bowel syndrome acquired in infancy: an update. J Pediatr Surg 19(6):711–718PubMedCrossRef Cooper A, Floyd TF, Ross AJ et al (1984) Morbidity and mortality of short-bowel syndrome acquired in infancy: an update. J Pediatr Surg 19(6):711–718PubMedCrossRef
Zurück zum Zitat Duro D, Kamin D, Duggan C (2008) Overview of pediatric short bowel syndrome. J Pediatr Gastroenterol Nutr 47:S33–SS6PubMedCrossRef Duro D, Kamin D, Duggan C (2008) Overview of pediatric short bowel syndrome. J Pediatr Gastroenterol Nutr 47:S33–SS6PubMedCrossRef
Zurück zum Zitat Gawecka A, Michalkiewicz J, Kornacka MK et al (2008) Immunologic properties differ in preterm infants fed olive oil vs soy-based lipid emulsions during parenteral nutrition. JPEN J Parenter Enteral Nutr 32(4):448–453PubMedCrossRef Gawecka A, Michalkiewicz J, Kornacka MK et al (2008) Immunologic properties differ in preterm infants fed olive oil vs soy-based lipid emulsions during parenteral nutrition. JPEN J Parenter Enteral Nutr 32(4):448–453PubMedCrossRef
Zurück zum Zitat Goulet O, Colomb-Jung V, Joly F (2009) Role of the colon in short bowel syndrome and intestinal transplantation. J Pediatr Gastroenterol Nutr 48(Suppl 2):S66–S71PubMedCrossRef Goulet O, Colomb-Jung V, Joly F (2009) Role of the colon in short bowel syndrome and intestinal transplantation. J Pediatr Gastroenterol Nutr 48(Suppl 2):S66–S71PubMedCrossRef
Zurück zum Zitat Greenberg RG, Moran C, Ulshen M et al (2010) Outcomes of catheter-associated infections in pediatric patients with short bowel syndrome. J Pediatr Gastroenterol Nutr 50(4):460–462PubMedPubMedCentralCrossRef Greenberg RG, Moran C, Ulshen M et al (2010) Outcomes of catheter-associated infections in pediatric patients with short bowel syndrome. J Pediatr Gastroenterol Nutr 50(4):460–462PubMedPubMedCentralCrossRef
Zurück zum Zitat Guertin F, Roy CC, Lepage G et al (1991) Effect of taurine on total parenteral nutrition-associated cholestasis. JPEN J Parenter Enteral Nutr 15(3):247–251PubMedCrossRef Guertin F, Roy CC, Lepage G et al (1991) Effect of taurine on total parenteral nutrition-associated cholestasis. JPEN J Parenter Enteral Nutr 15(3):247–251PubMedCrossRef
Zurück zum Zitat Halperin ML, Kamel KS (1996) D-lactic acidosis: turning sugar into acids in the gastrointestinal tract. Kidney Int 49(1):1–8PubMedCrossRef Halperin ML, Kamel KS (1996) D-lactic acidosis: turning sugar into acids in the gastrointestinal tract. Kidney Int 49(1):1–8PubMedCrossRef
Zurück zum Zitat Hyman PE, Everett SL, Harada T (1986) Gastric acid hypersecretion in short bowel syndrome in infants: Association with extent of resection and enteral feeding. J Pediatr Gastroenterol Nutr 5(2):191–197PubMedCrossRef Hyman PE, Everett SL, Harada T (1986) Gastric acid hypersecretion in short bowel syndrome in infants: Association with extent of resection and enteral feeding. J Pediatr Gastroenterol Nutr 5(2):191–197PubMedCrossRef
Zurück zum Zitat Jeppesen PB, Staun M, Tjellesen L et al (1998) Effect of intravenous ranitidine and omeprazole on intestinal absorption of water, sodium, and macronutrients in patients with intestinal resection. Gut 43(6):763–769PubMedPubMedCentralCrossRef Jeppesen PB, Staun M, Tjellesen L et al (1998) Effect of intravenous ranitidine and omeprazole on intestinal absorption of water, sodium, and macronutrients in patients with intestinal resection. Gut 43(6):763–769PubMedPubMedCentralCrossRef
Zurück zum Zitat Jeppesen PB, Pertkiewicz M, Messing B et al (2012) Teduglutide reduces need for parenteral support among patients with short bowel syndrome with intestinal failure. Gastroenterology 143(6):1473–1481PubMedCrossRef Jeppesen PB, Pertkiewicz M, Messing B et al (2012) Teduglutide reduces need for parenteral support among patients with short bowel syndrome with intestinal failure. Gastroenterology 143(6):1473–1481PubMedCrossRef
Zurück zum Zitat Kaufman SS, Loseke CA, Lupo JV et al (1997) Influence of bacterial overgrowth and intestinal inflammation on duration of parenteral nutrition in children with short bowel syndrome. J Pediatr 131(3):356–361PubMedCrossRef Kaufman SS, Loseke CA, Lupo JV et al (1997) Influence of bacterial overgrowth and intestinal inflammation on duration of parenteral nutrition in children with short bowel syndrome. J Pediatr 131(3):356–361PubMedCrossRef
Zurück zum Zitat King DR, Komer M, Hoffman J et al (1985) Broviac catheter sepsis: the natural history of an iatrogenic infection. J Pediatr Surg 20(6):728–733PubMedCrossRef King DR, Komer M, Hoffman J et al (1985) Broviac catheter sepsis: the natural history of an iatrogenic infection. J Pediatr Surg 20(6):728–733PubMedCrossRef
Zurück zum Zitat Klein GL, Goldblum RM, Moslen MT et al (1993) Increased biliary transferrin excretion following parenteral aluminum administration to rats. Pharmacol Toxicol 72(4-5):373–376PubMedCrossRef Klein GL, Goldblum RM, Moslen MT et al (1993) Increased biliary transferrin excretion following parenteral aluminum administration to rats. Pharmacol Toxicol 72(4-5):373–376PubMedCrossRef
Zurück zum Zitat Ladefoged K, Christensen KC, Hegnhöj J et al (1989) Effect of a long acting somatostatin analogue SMS 201-995 on jejunostomy effluents in patients with severe short bowel syndrome. Gut 30(7):943–949PubMedPubMedCentralCrossRef Ladefoged K, Christensen KC, Hegnhöj J et al (1989) Effect of a long acting somatostatin analogue SMS 201-995 on jejunostomy effluents in patients with severe short bowel syndrome. Gut 30(7):943–949PubMedPubMedCentralCrossRef
Zurück zum Zitat Mager DR, Marcon M, Wales P et al (2008) Use of N-acetyl cysteine for the treatment of parenteral nutrition-induced liver disease in children receiving home parenteral nutrition. J Pediatr Gastroenterol Nutr 46(2):220–223PubMedCrossRef Mager DR, Marcon M, Wales P et al (2008) Use of N-acetyl cysteine for the treatment of parenteral nutrition-induced liver disease in children receiving home parenteral nutrition. J Pediatr Gastroenterol Nutr 46(2):220–223PubMedCrossRef
Zurück zum Zitat McDoniel K, Taylor B, Huey W et al. (2004) Use of clonidine to decrease intestinal fluid losses in patients with high-output short-bowel syndrome. JPEN J Parenter Enteral Nutr 28(4):265–268 McDoniel K, Taylor B, Huey W et al. (2004) Use of clonidine to decrease intestinal fluid losses in patients with high-output short-bowel syndrome. JPEN J Parenter Enteral Nutr 28(4):265–268
Zurück zum Zitat McMillan NB, Mulroy C, MacKay MW et al (2008) Correlation of cholestasis with serum copper and whole-blood manganese levels in pediatric patients. Nutr Clin Pract 23(2):161–165PubMedCrossRef McMillan NB, Mulroy C, MacKay MW et al (2008) Correlation of cholestasis with serum copper and whole-blood manganese levels in pediatric patients. Nutr Clin Pract 23(2):161–165PubMedCrossRef
Zurück zum Zitat Nightingale JMD, Lennard-Jones JE, Walker ER et al (1990) Jejunal efflux in short bowel syndrome. Lancet 336(8718):765–768PubMedCrossRef Nightingale JMD, Lennard-Jones JE, Walker ER et al (1990) Jejunal efflux in short bowel syndrome. Lancet 336(8718):765–768PubMedCrossRef
Zurück zum Zitat Obialo CI, Clayman RV, Matts JP et al (1991) Pathogenesis of nephrolithiasis post-partial ileal bypass surgery: case-control study. The POSCH Group. Kidney Int 39(6):1249–1254PubMedCrossRef Obialo CI, Clayman RV, Matts JP et al (1991) Pathogenesis of nephrolithiasis post-partial ileal bypass surgery: case-control study. The POSCH Group. Kidney Int 39(6):1249–1254PubMedCrossRef
Zurück zum Zitat Ordonez P, Sondheimer JM, Fidanza S et al (2006) Long-term outcome of a patient with congenital short bowel syndrome. J Pediatr Gastroenterol Nutr 42(5):576–580PubMedCrossRef Ordonez P, Sondheimer JM, Fidanza S et al (2006) Long-term outcome of a patient with congenital short bowel syndrome. J Pediatr Gastroenterol Nutr 42(5):576–580PubMedCrossRef
Zurück zum Zitat Schmidt-Sommerfeld E, Snyder G, Rossi TM et al (1990) Catheter-related complications in 35 children and adolescents with gastrointestinal disease on home parenteral nutrition. JPEN J Parenter Enteral Nutr 14(2):148–151PubMedCrossRef Schmidt-Sommerfeld E, Snyder G, Rossi TM et al (1990) Catheter-related complications in 35 children and adolescents with gastrointestinal disease on home parenteral nutrition. JPEN J Parenter Enteral Nutr 14(2):148–151PubMedCrossRef
Zurück zum Zitat Sondheimer JM, Asturias E, Cadnapaphornchai M (1998) Infection and cholestasis in neonates with intestinal resection and long-term parenteral nutrition. J Pediatr Gastroenterol Nutr 27(2):131–137PubMedCrossRef Sondheimer JM, Asturias E, Cadnapaphornchai M (1998) Infection and cholestasis in neonates with intestinal resection and long-term parenteral nutrition. J Pediatr Gastroenterol Nutr 27(2):131–137PubMedCrossRef
Zurück zum Zitat Thompson JS, Ferguson DC (2000) Effect of the distal remnant on ileal adaptation. J Gastrointest Surg 4(4):430–434PubMedCrossRef Thompson JS, Ferguson DC (2000) Effect of the distal remnant on ileal adaptation. J Gastrointest Surg 4(4):430–434PubMedCrossRef
Zurück zum Zitat Thompson JS, Vanderhoof JA, Antonson DL (1985) Intestinal tapering and lengthening for short bowel syndrome. J Pediatr Gastroenterol Nutr 4(3):495–497PubMedCrossRef Thompson JS, Vanderhoof JA, Antonson DL (1985) Intestinal tapering and lengthening for short bowel syndrome. J Pediatr Gastroenterol Nutr 4(3):495–497PubMedCrossRef
Zurück zum Zitat Vanderhoof JA, Langnas AN, Pinch LW et al (1992) Short bowel syndrome. J Pediatr Gastroenterol Nutr 14(4):359–370PubMedCrossRef Vanderhoof JA, Langnas AN, Pinch LW et al (1992) Short bowel syndrome. J Pediatr Gastroenterol Nutr 14(4):359–370PubMedCrossRef
Zurück zum Zitat Vanderhoof JA, Young RJ, Murray N et al (1998) Treatment strategies for small bowel bacterial overgrowth in short bowel syndrome. J Pediatr Gastroenterol Nutr 27(2):155–160PubMedCrossRef Vanderhoof JA, Young RJ, Murray N et al (1998) Treatment strategies for small bowel bacterial overgrowth in short bowel syndrome. J Pediatr Gastroenterol Nutr 27(2):155–160PubMedCrossRef
Zurück zum Zitat Zaman N, Tam YK, Jewell LD et al (1996) Effects of taurine supplementation in parenteral nutrition-associated hepatosteatosis and lidocaine metabolism. A study using isolated rat liver perfusion. Drug Metab Dispos 24(5):534–541PubMed Zaman N, Tam YK, Jewell LD et al (1996) Effects of taurine supplementation in parenteral nutrition-associated hepatosteatosis and lidocaine metabolism. A study using isolated rat liver perfusion. Drug Metab Dispos 24(5):534–541PubMed
Zurück zum Zitat Baker JN, Harper JA, Kane JR et al (2011) Implementation and Evaluation of an Automated Patient Death Notification Policy at a Tertiary Pediatric Oncology Referral Center. J Pain Symptom Manag 42(5):652–656CrossRef Baker JN, Harper JA, Kane JR et al (2011) Implementation and Evaluation of an Automated Patient Death Notification Policy at a Tertiary Pediatric Oncology Referral Center. J Pain Symptom Manag 42(5):652–656CrossRef
Zurück zum Zitat Beretta S, Polastri D, Clerici CA et al (2010) End of life in children with cancer: Experience at the Pediatric Oncology Departement of the Istituto Nazionale in Milan. Pediatr Blood Cancer 54(1):88–91PubMedCrossRef Beretta S, Polastri D, Clerici CA et al (2010) End of life in children with cancer: Experience at the Pediatric Oncology Departement of the Istituto Nazionale in Milan. Pediatr Blood Cancer 54(1):88–91PubMedCrossRef
Zurück zum Zitat Bluebond-Langner M, Belasco JB, Goldman A et al (2007) Understanding parents’ approaches to care and treatment children with cancer when standard therapy has failed. J Clin Oncol 25(17):2414–2419PubMedCrossRef Bluebond-Langner M, Belasco JB, Goldman A et al (2007) Understanding parents’ approaches to care and treatment children with cancer when standard therapy has failed. J Clin Oncol 25(17):2414–2419PubMedCrossRef
Zurück zum Zitat Bradshaw G, Hinds P, Lensing S et al (2005) Cancer-related deaths in children and adolescents. J Palliat Med 8(1):86–95PubMedCrossRef Bradshaw G, Hinds P, Lensing S et al (2005) Cancer-related deaths in children and adolescents. J Palliat Med 8(1):86–95PubMedCrossRef
Zurück zum Zitat Changa AR, Czeisler BM, Lord AS (2019) Management of elevated intracranial pressure: a review. Curr Neurol Neurosci Rep 19(12):99PubMedCrossRef Changa AR, Czeisler BM, Lord AS (2019) Management of elevated intracranial pressure: a review. Curr Neurol Neurosci Rep 19(12):99PubMedCrossRef
Zurück zum Zitat Collins JJ, Byrnes ME, Dunkel IJ et al (2000) The measurement of symptoms in children with cancer. J Pain Symptom Manag 19(5):363–377CrossRef Collins JJ, Byrnes ME, Dunkel IJ et al (2000) The measurement of symptoms in children with cancer. J Pain Symptom Manag 19(5):363–377CrossRef
Zurück zum Zitat Delgado E, Barfield RC, Baker JN et al (2010) Availability of palliative care services for children with cancer in economically diverse regions of the world. Eur J Cancer 46(12):2260–2266PubMedPubMedCentralCrossRef Delgado E, Barfield RC, Baker JN et al (2010) Availability of palliative care services for children with cancer in economically diverse regions of the world. Eur J Cancer 46(12):2260–2266PubMedPubMedCentralCrossRef
Zurück zum Zitat Desforges JF, Byrne TN (1992) Spinal cord compression from epidural metastases. N Engl J Med 327(9):614–619CrossRef Desforges JF, Byrne TN (1992) Spinal cord compression from epidural metastases. N Engl J Med 327(9):614–619CrossRef
Zurück zum Zitat Dussel V, Joffe S, Hilden JM et al (2010) Considerations about hastening death among parents of children who die of cancer. Arch Pediatr Adolesc Med 164(3):231–237PubMedPubMedCentralCrossRef Dussel V, Joffe S, Hilden JM et al (2010) Considerations about hastening death among parents of children who die of cancer. Arch Pediatr Adolesc Med 164(3):231–237PubMedPubMedCentralCrossRef
Zurück zum Zitat Esquenazi Y, Lo VP, Lee K (2017) Critical care management of cerebral edema in brain tumors. J Intensive Care Med 32(1):15–24PubMedCrossRef Esquenazi Y, Lo VP, Lee K (2017) Critical care management of cerebral edema in brain tumors. J Intensive Care Med 32(1):15–24PubMedCrossRef
Zurück zum Zitat Frühwald M (2006) ZNS-Tumoren im Kindes-und Jugendalter: Diagnostik, Therapiemöglichkeiten und palliative Ansätze. Kinder- Jugendarzt 37:633–645 Frühwald M (2006) ZNS-Tumoren im Kindes-und Jugendalter: Diagnostik, Therapiemöglichkeiten und palliative Ansätze. Kinder- Jugendarzt 37:633–645
Zurück zum Zitat Frühwald MC, Rutkowski S (2011) Tumors of the central nervous system in children and adolescents. Dtsch Arztebl Int 108(22):390–397PubMedPubMedCentral Frühwald MC, Rutkowski S (2011) Tumors of the central nervous system in children and adolescents. Dtsch Arztebl Int 108(22):390–397PubMedPubMedCentral
Zurück zum Zitat Frühwald MC, Holzapfel J, Hasselblatt M (2019) Tumoren des ZNS im Kindes-und Jugendalter–Grundlagen und aktuelle Entwicklungen. Trilium Krebsmedizin 28(1):32–43 Frühwald MC, Holzapfel J, Hasselblatt M (2019) Tumoren des ZNS im Kindes-und Jugendalter–Grundlagen und aktuelle Entwicklungen. Trilium Krebsmedizin 28(1):32–43
Zurück zum Zitat Goldman A, Hewitt M, Collins GS et al (2006) Symptoms in children/young people with progressive malignant disease: United Kingdom children’s cancer study group/paediatric oncology nurses forum survey. Pediatrics 117(6):e1179–e1e86PubMedCrossRef Goldman A, Hewitt M, Collins GS et al (2006) Symptoms in children/young people with progressive malignant disease: United Kingdom children’s cancer study group/paediatric oncology nurses forum survey. Pediatrics 117(6):e1179–e1e86PubMedCrossRef
Zurück zum Zitat Goodenough B, Drew B, Higgins S et al (2004) Bereavement outcomes for parents who lose a child to cancer: Are place of death and sex of parent associated with differences in psychological functioning? Psychooncology 13(11):779–791PubMedCrossRef Goodenough B, Drew B, Higgins S et al (2004) Bereavement outcomes for parents who lose a child to cancer: Are place of death and sex of parent associated with differences in psychological functioning? Psychooncology 13(11):779–791PubMedCrossRef
Zurück zum Zitat Hechler T, Blankenburg M, Friedrichsdorf S et al (2008) Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr 220(3):166–174PubMedCrossRef Hechler T, Blankenburg M, Friedrichsdorf S et al (2008) Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr 220(3):166–174PubMedCrossRef
Zurück zum Zitat Hunt H, Valdimarsdottir U, Mucci L et al (2006) When death appears best for the child with severe malignancy: A nationwide parental follow-up. Palliat Med 20(6):567–577PubMedCrossRef Hunt H, Valdimarsdottir U, Mucci L et al (2006) When death appears best for the child with severe malignancy: A nationwide parental follow-up. Palliat Med 20(6):567–577PubMedCrossRef
Zurück zum Zitat Hynson JL, Sawyer SM (2001) Paediatric palliative care: distinctive needs and emerging issues. J Paediatr Child Health 37(4):323–325PubMedCrossRef Hynson JL, Sawyer SM (2001) Paediatric palliative care: distinctive needs and emerging issues. J Paediatr Child Health 37(4):323–325PubMedCrossRef
Zurück zum Zitat Jalmsell L, Kreicbergs U, Onelöv E et al (2006) Symptoms affecting children with malignancies during the last month of life: A nationwide follow-up. Pediatrics 117(4):1314–1320PubMedCrossRef Jalmsell L, Kreicbergs U, Onelöv E et al (2006) Symptoms affecting children with malignancies during the last month of life: A nationwide follow-up. Pediatrics 117(4):1314–1320PubMedCrossRef
Zurück zum Zitat Janssen G, Friedland C, Richter U et al (2004) Ambulante palliativmedizinische Versorgung krebskranker Kinder und ihrer Familien [Out-patient palliative care of children with cancer and their families]. Klin Padiatr 216(3):183–188PubMedCrossRef Janssen G, Friedland C, Richter U et al (2004) Ambulante palliativmedizinische Versorgung krebskranker Kinder und ihrer Familien [Out-patient palliative care of children with cancer and their families]. Klin Padiatr 216(3):183–188PubMedCrossRef
Zurück zum Zitat Kaal EC, Vecht CJ (2004) The management of brain edema in brain tumors. Curr Opin Oncol 16(6):593–600PubMedCrossRef Kaal EC, Vecht CJ (2004) The management of brain edema in brain tumors. Curr Opin Oncol 16(6):593–600PubMedCrossRef
Zurück zum Zitat Kars MC, Grypdonck MHF, Beishuizen A et al (2010) Factors influencing parental readiness to let their child with cancer die. Pediatr Blood Cancer 54(7):1000–1008PubMedCrossRef Kars MC, Grypdonck MHF, Beishuizen A et al (2010) Factors influencing parental readiness to let their child with cancer die. Pediatr Blood Cancer 54(7):1000–1008PubMedCrossRef
Zurück zum Zitat Kaye EC, Jerkins J, Gushue CA et al (2018) Predictors of late palliative care referral in children with cancer. J Pain Symptom Manag 55(6):1550–1556CrossRef Kaye EC, Jerkins J, Gushue CA et al (2018) Predictors of late palliative care referral in children with cancer. J Pain Symptom Manag 55(6):1550–1556CrossRef
Zurück zum Zitat Kleihues P, Louis DN, Scheithauer BW et al (2002) The WHO classification of tumors of the nervous system. J Neuropathol Exp Neurol 61(3):215–225PubMedCrossRef Kleihues P, Louis DN, Scheithauer BW et al (2002) The WHO classification of tumors of the nervous system. J Neuropathol Exp Neurol 61(3):215–225PubMedCrossRef
Zurück zum Zitat Klopfenstein KJ, Hutchison C, Clark C et al (2001) Variables influencing end-of-life care in children and adolescents with cancer. J Pediatr Hematol Oncol 23(8):481–486PubMedCrossRef Klopfenstein KJ, Hutchison C, Clark C et al (2001) Variables influencing end-of-life care in children and adolescents with cancer. J Pediatr Hematol Oncol 23(8):481–486PubMedCrossRef
Zurück zum Zitat Kreicbergs U (2006) Parental experiences of losing a child to cancer: A nationwide survey. Psychother Austr 12(1):12–19 Kreicbergs U (2006) Parental experiences of losing a child to cancer: A nationwide survey. Psychother Austr 12(1):12–19
Zurück zum Zitat Kreicbergs U, Valdimarsdottir U, Onelöv E et al (2004a) Anxiety and depression in parents 4-9 years after the loss of a child owing to malignancy: A population-based follow-up. Psychol Med 34(8):1431–1441PubMedCrossRef Kreicbergs U, Valdimarsdottir U, Onelöv E et al (2004a) Anxiety and depression in parents 4-9 years after the loss of a child owing to malignancy: A population-based follow-up. Psychol Med 34(8):1431–1441PubMedCrossRef
Zurück zum Zitat Kreicbergs U, Valdimarsdottir U, Onelöv E et al (2004b) Talking about death with children who have severe malignant disease. N Engl J Med 351(12):1175–1186PubMedCrossRef Kreicbergs U, Valdimarsdottir U, Onelöv E et al (2004b) Talking about death with children who have severe malignant disease. N Engl J Med 351(12):1175–1186PubMedCrossRef
Zurück zum Zitat Kreicbergs U, Valdimarsdottir U, Steineck G et al (2004c) A population-based nationwide study of parents’ perceptions of a questionnaire on their child’s death due to cancer. Lancet 364(9436):787–789PubMedCrossRef Kreicbergs U, Valdimarsdottir U, Steineck G et al (2004c) A population-based nationwide study of parents’ perceptions of a questionnaire on their child’s death due to cancer. Lancet 364(9436):787–789PubMedCrossRef
Zurück zum Zitat Kreicbergs U, Valdimarsdottir U, Onelöv E et al (2005) Care-related distress. A nationwide study of parents who lost their child to cancer. J Clin Oncol 23(36):9162–9171PubMedCrossRef Kreicbergs U, Valdimarsdottir U, Onelöv E et al (2005) Care-related distress. A nationwide study of parents who lost their child to cancer. J Clin Oncol 23(36):9162–9171PubMedCrossRef
Zurück zum Zitat Kreicbergs U, Lannen P, Onelöv E et al (2007) Parental grief after losing a child to cancer: Impact of professional and social support on long-term outcomes. J Clin Oncol 25(22):3307–3312PubMedCrossRef Kreicbergs U, Lannen P, Onelöv E et al (2007) Parental grief after losing a child to cancer: Impact of professional and social support on long-term outcomes. J Clin Oncol 25(22):3307–3312PubMedCrossRef
Zurück zum Zitat Lin AL, Avila EK (2017) Neurologic emergencies in the patients with cancer: diagnosis and management. J Intensive Care Med 32(2):99–115PubMedCrossRef Lin AL, Avila EK (2017) Neurologic emergencies in the patients with cancer: diagnosis and management. J Intensive Care Med 32(2):99–115PubMedCrossRef
Zurück zum Zitat Loghin M, Levin VA (2006) Headache related to brain tumors. Curr Treat Options Neurol 8(1):21–32PubMedCrossRef Loghin M, Levin VA (2006) Headache related to brain tumors. Curr Treat Options Neurol 8(1):21–32PubMedCrossRef
Zurück zum Zitat Mack JW, Hilden JM, Watterson J et al (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23(36):9155–9161PubMedCrossRef Mack JW, Hilden JM, Watterson J et al (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23(36):9155–9161PubMedCrossRef
Zurück zum Zitat Mack JW, Cronin AM, Uno H et al (2019) Unrealistic parental expectations for cure in poor-prognosis childhood cancer. Cancer 126:416–424PubMedCrossRef Mack JW, Cronin AM, Uno H et al (2019) Unrealistic parental expectations for cure in poor-prognosis childhood cancer. Cancer 126:416–424PubMedCrossRef
Zurück zum Zitat Marcus KL, Santos G, Ciapponi A et al (2020) Impact of specialized pediatric palliative care: a systematic review. J Pain Symptom Manage 59(2):339-64.e10 Marcus KL, Santos G, Ciapponi A et al (2020) Impact of specialized pediatric palliative care: a systematic review. J Pain Symptom Manage 59(2):339-64.e10
Zurück zum Zitat McCallum DE, Byrne P, Bruera E (2000) How children die in hospital. J Pain Symptom Manag 20(6):417–423CrossRef McCallum DE, Byrne P, Bruera E (2000) How children die in hospital. J Pain Symptom Manag 20(6):417–423CrossRef
Zurück zum Zitat Roth C, Stitz H, Roth C et al (2016) Craniocervical manual lymphatic drainage and its impact on intracranial pressure–a pilot study. Eur J Neurol 23(9):1441–1446PubMedCrossRef Roth C, Stitz H, Roth C et al (2016) Craniocervical manual lymphatic drainage and its impact on intracranial pressure–a pilot study. Eur J Neurol 23(9):1441–1446PubMedCrossRef
Zurück zum Zitat Ryken TC, McDermott M, Robinson PD et al (2010) The role of steroids in the management of brain metastases: a systematic review and evidence-based clinical practice guideline. J Neuro-Oncol 96(1):103–114CrossRef Ryken TC, McDermott M, Robinson PD et al (2010) The role of steroids in the management of brain metastases: a systematic review and evidence-based clinical practice guideline. J Neuro-Oncol 96(1):103–114CrossRef
Zurück zum Zitat Ryken TC, Kuo JS, Prabhu RS et al (2019) Congress of neurological surgeons systematic review and evidence-based guidelines on the role of steroids in the treatment of adults with metastatic brain tumors. Neurosurgery 84(3):E190–E191CrossRef Ryken TC, Kuo JS, Prabhu RS et al (2019) Congress of neurological surgeons systematic review and evidence-based guidelines on the role of steroids in the treatment of adults with metastatic brain tumors. Neurosurgery 84(3):E190–E191CrossRef
Zurück zum Zitat Shah S, Weitman S, Langevin AM et al (1998) Phase I therapy trials in children with cancer. J Pediatr Hematol Oncol 20(5):431–438PubMedCrossRef Shah S, Weitman S, Langevin AM et al (1998) Phase I therapy trials in children with cancer. J Pediatr Hematol Oncol 20(5):431–438PubMedCrossRef
Zurück zum Zitat Sirkiä K, Saarinen UM, Ahlgren B et al (1997) Terminal care of the child with cancer at home. Acta Paediatr 86(10):1125–1130PubMedCrossRef Sirkiä K, Saarinen UM, Ahlgren B et al (1997) Terminal care of the child with cancer at home. Acta Paediatr 86(10):1125–1130PubMedCrossRef
Zurück zum Zitat Sisk BA, Kang TI, Goldstein R et al (2019) Decisional burden among parents of children with cancer. Cancer 125(8):1365–1372PubMedCrossRef Sisk BA, Kang TI, Goldstein R et al (2019) Decisional burden among parents of children with cancer. Cancer 125(8):1365–1372PubMedCrossRef
Zurück zum Zitat Snaman JM, Kaye EC, Baker JN et al (2018) Pediatric palliative oncology: the state of the science and art of caring for children with cancer. Curr Opin Pediatr 30(1):40–48PubMedCrossRef Snaman JM, Kaye EC, Baker JN et al (2018) Pediatric palliative oncology: the state of the science and art of caring for children with cancer. Curr Opin Pediatr 30(1):40–48PubMedCrossRef
Zurück zum Zitat Streffer J, Bitzer M, Schabet M et al (2001) Response of radiochemotherapy-associated cerebral edema to a phytotherapeutic agent, H15. Neurology 56(9):1219–1221PubMedCrossRef Streffer J, Bitzer M, Schabet M et al (2001) Response of radiochemotherapy-associated cerebral edema to a phytotherapeutic agent, H15. Neurology 56(9):1219–1221PubMedCrossRef
Zurück zum Zitat Surkan PJ, Dickman PW, Steineck G et al (2006a) Home care of a child dying of malignancy and parental awareness of a child’s impending death. Palliat Med 20:161–169PubMedCrossRef Surkan PJ, Dickman PW, Steineck G et al (2006a) Home care of a child dying of malignancy and parental awareness of a child’s impending death. Palliat Med 20:161–169PubMedCrossRef
Zurück zum Zitat Surkan PJ, Kreicbergs U, Valdimarsdottir U et al (2006b) Perceptions of inadequate health care and feelings of guilt in parents after the death of a child to a malignancy: a population-based long-term follow-up. J Palliat Med 9(2):317–331PubMedCrossRef Surkan PJ, Kreicbergs U, Valdimarsdottir U et al (2006b) Perceptions of inadequate health care and feelings of guilt in parents after the death of a child to a malignancy: a population-based long-term follow-up. J Palliat Med 9(2):317–331PubMedCrossRef
Zurück zum Zitat Ullrich CK, Dussel V, Hilden JM et al (2010) End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care. Blood 115(19):3879–3885PubMedCrossRef Ullrich CK, Dussel V, Hilden JM et al (2010) End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care. Blood 115(19):3879–3885PubMedCrossRef
Zurück zum Zitat Valdimarsdóttir U, Kreicbergs U, Hauksdóttir A et al (2007) Parents’ intellectual and emotional awareness of their child’s impending death to cancer: a population-based long-term follow-up study. Lancet Oncol 8(8):706–714PubMedCrossRef Valdimarsdóttir U, Kreicbergs U, Hauksdóttir A et al (2007) Parents’ intellectual and emotional awareness of their child’s impending death to cancer: a population-based long-term follow-up study. Lancet Oncol 8(8):706–714PubMedCrossRef
Zurück zum Zitat Vallero SG, Lijoi S, Bertin D et al (2014) End-of-life care in pediatric neuro-oncology. Pediatr Blood Cancer 61(11):2004–2011PubMedCrossRef Vallero SG, Lijoi S, Bertin D et al (2014) End-of-life care in pediatric neuro-oncology. Pediatr Blood Cancer 61(11):2004–2011PubMedCrossRef
Zurück zum Zitat Vickers JL, Carlise C (2000) Choices and control: parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs 17(1):12–21PubMedCrossRef Vickers JL, Carlise C (2000) Choices and control: parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs 17(1):12–21PubMedCrossRef
Zurück zum Zitat Watterson G, Goldman A, Michalski A (2002) Corticosteroids in the palliative phase of paediatric brain tumours. Arch Dis Child 86(Suppl 1):A76 Watterson G, Goldman A, Michalski A (2002) Corticosteroids in the palliative phase of paediatric brain tumours. Arch Dis Child 86(Suppl 1):A76
Zurück zum Zitat Wick W, Küker W (2004) Brain edema in neurooncology: radiological assessment and management. Oncol Res Treat 27(3):261–266CrossRef Wick W, Küker W (2004) Brain edema in neurooncology: radiological assessment and management. Oncol Res Treat 27(3):261–266CrossRef
Zurück zum Zitat Widger K, Sutradhar R, Rapoport A et al (2018) Predictors of specialized pediatric palliative care involvement and impact on patterns of end-of-life care in children with cancer. J Clin Oncol 36(8):801–807PubMedCrossRef Widger K, Sutradhar R, Rapoport A et al (2018) Predictors of specialized pediatric palliative care involvement and impact on patterns of end-of-life care in children with cancer. J Clin Oncol 36(8):801–807PubMedCrossRef
Zurück zum Zitat Wolfe J, Grier HE, Klar N et al (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342(5):326–333PubMedCrossRef Wolfe J, Grier HE, Klar N et al (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342(5):326–333PubMedCrossRef
Zurück zum Zitat Zernikow B (Hrsg) (2021) Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle. Springer, Berlin/Heidelberg Zernikow B (Hrsg) (2021) Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle. Springer, Berlin/Heidelberg
Zurück zum Zitat Zernikow B, Szybalski K, Hübner-Mohler B et al (2019) Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period. Palliat Med 33(3):381–391PubMedCrossRef Zernikow B, Szybalski K, Hübner-Mohler B et al (2019) Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period. Palliat Med 33(3):381–391PubMedCrossRef
Zurück zum Zitat Ezeanolue EE, Wodi AP, Patel R et al (2006) Sexual behaviors and procreational intentions of adolescents and young adults with perinatally acquired human immunodeficiency virus infection: experience of an urban tertiary center. J Adolesc Health 38(6):719–725PubMedCrossRef Ezeanolue EE, Wodi AP, Patel R et al (2006) Sexual behaviors and procreational intentions of adolescents and young adults with perinatally acquired human immunodeficiency virus infection: experience of an urban tertiary center. J Adolesc Health 38(6):719–725PubMedCrossRef
Zurück zum Zitat Garvie PA, Zeldow B, Malee K et al (2014) Discordance of cognitive and academic achievement outcomes in youth with perinatal HIV exposure. Pediatr Infect Dis J 33(9):e232PubMedPubMedCentralCrossRef Garvie PA, Zeldow B, Malee K et al (2014) Discordance of cognitive and academic achievement outcomes in youth with perinatal HIV exposure. Pediatr Infect Dis J 33(9):e232PubMedPubMedCentralCrossRef
Zurück zum Zitat Gaughan DM, Hughes MD, Oleske JM et al (2004) Psychiatric hospitalizations among children and youths with human immunodeficiency virus infection. Pediatrics 113(6):e544–ee51PubMedCrossRef Gaughan DM, Hughes MD, Oleske JM et al (2004) Psychiatric hospitalizations among children and youths with human immunodeficiency virus infection. Pediatrics 113(6):e544–ee51PubMedCrossRef
Zurück zum Zitat Howland LC, Storm DS (2007) Negative life events: risk to health- related quality of life in children and youth with HIV infection. J Assoc Nurses AIDS Care 18:3–11PubMedCrossRef Howland LC, Storm DS (2007) Negative life events: risk to health- related quality of life in children and youth with HIV infection. J Assoc Nurses AIDS Care 18:3–11PubMedCrossRef
Zurück zum Zitat Lee GM, Gortmaker SL, McIntosh K et al (2006) Quality of life for children and adolescents: Impact of HIV infection and antiretroviral treatment. Pediatrics 117(2):273–283PubMedCrossRef Lee GM, Gortmaker SL, McIntosh K et al (2006) Quality of life for children and adolescents: Impact of HIV infection and antiretroviral treatment. Pediatrics 117(2):273–283PubMedCrossRef
Zurück zum Zitat Oleske JM, Czarniecki L (1999) Continuum of palliative care: lessons from caring for children infected with HIV-1. Lancet 345:1287–1291CrossRef Oleske JM, Czarniecki L (1999) Continuum of palliative care: lessons from caring for children infected with HIV-1. Lancet 345:1287–1291CrossRef
Zurück zum Zitat Wilmshurst JM, Hammond CK, Donald K et al (2018) NeuroAIDS in children. In: Brew BJ (Hrsg) Handbook of clinical neurology. Elsevier, Amsterdam/New York, S 99–116 Wilmshurst JM, Hammond CK, Donald K et al (2018) NeuroAIDS in children. In: Brew BJ (Hrsg) Handbook of clinical neurology. Elsevier, Amsterdam/New York, S 99–116
Zurück zum Zitat Balkin EM, Sleeper LA, Kirkpatrick JN et al (2018) Physician perspectives on palliative care for children with advanced heart disease: a comparison between pediatric cardiology and palliative care physicians. J Palliat Med Balkin EM, Sleeper LA, Kirkpatrick JN et al (2018) Physician perspectives on palliative care for children with advanced heart disease: a comparison between pediatric cardiology and palliative care physicians. J Palliat Med
Zurück zum Zitat Barnea O, Austin EH, Richman B et al (1994) Balancing the circulation: theoretic optimization of pulmonary/systemic flow ratio in hypoplastic left heart syndrome. J Am Coll Cardiol 24(5):1376–1381PubMedCrossRef Barnea O, Austin EH, Richman B et al (1994) Balancing the circulation: theoretic optimization of pulmonary/systemic flow ratio in hypoplastic left heart syndrome. J Am Coll Cardiol 24(5):1376–1381PubMedCrossRef
Zurück zum Zitat Berger J, Gartner J (2006) X-linked adrenoleukodystrophy: clinical, biochemical and pathogenetic aspects. Biochimica et Biophysica Acta (BBA)-Molecular Cell Res 1763(12):1721–1732CrossRef Berger J, Gartner J (2006) X-linked adrenoleukodystrophy: clinical, biochemical and pathogenetic aspects. Biochimica et Biophysica Acta (BBA)-Molecular Cell Res 1763(12):1721–1732CrossRef
Zurück zum Zitat Buchhorn R, Hulpke-Wette M, Ruschewski W et al (2003) Effects of therapeutic beta blockade on myocardial function and cardiac remodelling in congenital cardiac disease. Cardiol Young 13(1):36–43PubMedCrossRef Buchhorn R, Hulpke-Wette M, Ruschewski W et al (2003) Effects of therapeutic beta blockade on myocardial function and cardiac remodelling in congenital cardiac disease. Cardiol Young 13(1):36–43PubMedCrossRef
Zurück zum Zitat Davis JAM, Bass A, Humphrey L et al (2020) Early integration of palliative care in families of children with single ventricle congenital heart defects: a quality improvement project to enhance family support. Pediatr Cardiol 41(1):114–122PubMedCrossRef Davis JAM, Bass A, Humphrey L et al (2020) Early integration of palliative care in families of children with single ventricle congenital heart defects: a quality improvement project to enhance family support. Pediatr Cardiol 41(1):114–122PubMedCrossRef
Zurück zum Zitat Eicken A, Kolb C, Lange S et al (2006) Implantable cardioverter defibrillator (ICD) in children. Int J Cardiol 107(1):30–35PubMedCrossRef Eicken A, Kolb C, Lange S et al (2006) Implantable cardioverter defibrillator (ICD) in children. Int J Cardiol 107(1):30–35PubMedCrossRef
Zurück zum Zitat Galiè N, Humbert M, Vachiery J-L et al (2016) 2015 ESC/ERS guidelines for the diagnosis and treatment of pulmonary hypertension: the Joint Task Force for the Diagnosis and Treatment of Pulmonary Hypertension of the European Society of Cardiology (ESC) and the European Respiratory Society (ERS): endorsed by: Association for European Paediatric and Congenital Cardiology (AEPC), International Society for Heart and Lung Transplantation (ISHLT). Eur Heart J 37(1):67–119PubMedCrossRef Galiè N, Humbert M, Vachiery J-L et al (2016) 2015 ESC/ERS guidelines for the diagnosis and treatment of pulmonary hypertension: the Joint Task Force for the Diagnosis and Treatment of Pulmonary Hypertension of the European Society of Cardiology (ESC) and the European Respiratory Society (ERS): endorsed by: Association for European Paediatric and Congenital Cardiology (AEPC), International Society for Heart and Lung Transplantation (ISHLT). Eur Heart J 37(1):67–119PubMedCrossRef
Zurück zum Zitat Gupta S, Giuffre R, Crawford S et al (1998) Covert fears, anxiety and depression in congenital heart disease. Cardiol Young 8(4):491–499PubMedCrossRef Gupta S, Giuffre R, Crawford S et al (1998) Covert fears, anxiety and depression in congenital heart disease. Cardiol Young 8(4):491–499PubMedCrossRef
Zurück zum Zitat Kwiatkowska J, Budrejko S, Wasicionek M et al (2020) Long-term follow-up of implantable cardioverter-defibrillators in children: Indications and outcomes. Adv Clin Exp Med 29(1):123–133PubMed Kwiatkowska J, Budrejko S, Wasicionek M et al (2020) Long-term follow-up of implantable cardioverter-defibrillators in children: Indications and outcomes. Adv Clin Exp Med 29(1):123–133PubMed
Zurück zum Zitat Lindinger A, Schwedler G, Hense H-W (2010) Prevalence of congenital heart defects in newborns in Germany: Results of the first registration year of the PAN Study (July 2006 to June 2007). Klin Padiatr 222(05):321–326PubMedCrossRef Lindinger A, Schwedler G, Hense H-W (2010) Prevalence of congenital heart defects in newborns in Germany: Results of the first registration year of the PAN Study (July 2006 to June 2007). Klin Padiatr 222(05):321–326PubMedCrossRef
Zurück zum Zitat Lipshultz SE, Law YM, Asante-Korang A et al (2019) Cardiomyopathy in children: Classification and diagnosis: a scientific statement from the american heart association. Circulation 140(1):e9–e68PubMedCrossRef Lipshultz SE, Law YM, Asante-Korang A et al (2019) Cardiomyopathy in children: Classification and diagnosis: a scientific statement from the american heart association. Circulation 140(1):e9–e68PubMedCrossRef
Zurück zum Zitat Meberg A, Lindberg H, Thaulow E (2005) Congenital heart defects: the patients who die. Acta Paediatr 94(8):1060–1065PubMedCrossRef Meberg A, Lindberg H, Thaulow E (2005) Congenital heart defects: the patients who die. Acta Paediatr 94(8):1060–1065PubMedCrossRef
Zurück zum Zitat Sarajuuri A, Jokinen E, Puosi R et al (2007) Neurodevelopmental and neuroradiologic outcomes in patients with univentricular heart aged 5 to 7 years: related risk factor analysis. J Thorac Cardiovasc Surg 133(6):1524–1532PubMedCrossRef Sarajuuri A, Jokinen E, Puosi R et al (2007) Neurodevelopmental and neuroradiologic outcomes in patients with univentricular heart aged 5 to 7 years: related risk factor analysis. J Thorac Cardiovasc Surg 133(6):1524–1532PubMedCrossRef
Zurück zum Zitat Schranz D (2017) Behandlung der chronischen Herzinsuffizienz im Kindesalter. Monatsschr Kinderheilk 165(11):982–991CrossRef Schranz D (2017) Behandlung der chronischen Herzinsuffizienz im Kindesalter. Monatsschr Kinderheilk 165(11):982–991CrossRef
Zurück zum Zitat Schranz D, Bauer A, Reich B et al (2015) Fifteen-year single center experience with the “Giessen Hybrid” approach for hypoplastic left heart and variants: current strategies and outcomes. Pediatr Cardiol 36(2):365–373PubMedCrossRef Schranz D, Bauer A, Reich B et al (2015) Fifteen-year single center experience with the “Giessen Hybrid” approach for hypoplastic left heart and variants: current strategies and outcomes. Pediatr Cardiol 36(2):365–373PubMedCrossRef
Zurück zum Zitat Silka MJ, Bar-Cohen Y (2006) Pacemakers and implantable cardioverter-defibrillators in pediatric patients. Heart Rhythm 3(11):1360–1366PubMedCrossRef Silka MJ, Bar-Cohen Y (2006) Pacemakers and implantable cardioverter-defibrillators in pediatric patients. Heart Rhythm 3(11):1360–1366PubMedCrossRef
Zurück zum Zitat Tobler D, Greutmann M, Colman JM et al (2012) End-of-life in adults with congenital heart disease: a call for early communication. Int J Cardiol 155(3):383–387PubMedCrossRef Tobler D, Greutmann M, Colman JM et al (2012) End-of-life in adults with congenital heart disease: a call for early communication. Int J Cardiol 155(3):383–387PubMedCrossRef
Zurück zum Zitat Troost E, Roggen L, Goossens E et al (2019) Advanced care planning in adult congenital heart disease: transitioning from repair to palliation and end-of-life care. Int J Cardiol 279:57–61PubMedCrossRef Troost E, Roggen L, Goossens E et al (2019) Advanced care planning in adult congenital heart disease: transitioning from repair to palliation and end-of-life care. Int J Cardiol 279:57–61PubMedCrossRef
Zurück zum Zitat Wik G, Jortveit J, Sitras V et al (2020) Severe congenital heart defects: incidence, causes and time trends of preoperative mortality in Norway. Arch Dis Child 105(8):738–743PubMedCrossRef Wik G, Jortveit J, Sitras V et al (2020) Severe congenital heart defects: incidence, causes and time trends of preoperative mortality in Norway. Arch Dis Child 105(8):738–743PubMedCrossRef
Zurück zum Zitat Aboussouan LS, Mireles-Cabodevila E (2017) Sleep-disordered breathing in neuromuscular disease: diagnostic and therapeutic challenges. Chest 152(4):880–892PubMedCrossRef Aboussouan LS, Mireles-Cabodevila E (2017) Sleep-disordered breathing in neuromuscular disease: diagnostic and therapeutic challenges. Chest 152(4):880–892PubMedCrossRef
Zurück zum Zitat Amaddeo A, Frapin A, Fauroux B (2016) Long-term non-invasive ventilation in children. Lancet Respir Med 4(12):999–1008PubMedCrossRef Amaddeo A, Frapin A, Fauroux B (2016) Long-term non-invasive ventilation in children. Lancet Respir Med 4(12):999–1008PubMedCrossRef
Zurück zum Zitat Amin R, Sayal P, Syed F et al (2014) Pediatric long-term home mechanical ventilation: twenty years of follow-up from one Canadian center. Pediatr Pulmonol 49(8):816–824PubMedCrossRef Amin R, Sayal P, Syed F et al (2014) Pediatric long-term home mechanical ventilation: twenty years of follow-up from one Canadian center. Pediatr Pulmonol 49(8):816–824PubMedCrossRef
Zurück zum Zitat Bach JR, Saporito LR (1996) Criteria for extubation and tracheostomy tube removal for patients with ventilatory failure: a different approach to weaning. Chest 110(6):1566–1571PubMedCrossRef Bach JR, Saporito LR (1996) Criteria for extubation and tracheostomy tube removal for patients with ventilatory failure: a different approach to weaning. Chest 110(6):1566–1571PubMedCrossRef
Zurück zum Zitat Bach JR, Campagnolo DI, Hoeman S (1991) Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support. Am J Phys Med Rehabil 70(3):129PubMedCrossRef Bach JR, Campagnolo DI, Hoeman S (1991) Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support. Am J Phys Med Rehabil 70(3):129PubMedCrossRef
Zurück zum Zitat Bach JR, Vega J, Mojors J et al (2003) Spinal muscular atrophy type 1. Am J Phys Med Rehabil 82(2):137–142PubMedCrossRef Bach JR, Vega J, Mojors J et al (2003) Spinal muscular atrophy type 1. Am J Phys Med Rehabil 82(2):137–142PubMedCrossRef
Zurück zum Zitat Bianchi C, Baiardi P (2008) Cough peak flows: standard values for children and adolescents. Am J Phys Med Rehabil 87(6):461–467PubMedCrossRef Bianchi C, Baiardi P (2008) Cough peak flows: standard values for children and adolescents. Am J Phys Med Rehabil 87(6):461–467PubMedCrossRef
Zurück zum Zitat Brito MF, Moreira GA, Pradella-Hallinan M et al (2009) Air stacking and chest compression increase peak cough flow in patients with Duchenne muscular dystrophy. J Bras Pneumol 35(10) Brito MF, Moreira GA, Pradella-Hallinan M et al (2009) Air stacking and chest compression increase peak cough flow in patients with Duchenne muscular dystrophy. J Bras Pneumol 35(10)
Zurück zum Zitat Carnevale FA (2007) Revisiting Goffman’s Stigma: the social experience of families with children requiring mechanical ventilation at home. J Child Health Care 11(1):7–18PubMedCrossRef Carnevale FA (2007) Revisiting Goffman’s Stigma: the social experience of families with children requiring mechanical ventilation at home. J Child Health Care 11(1):7–18PubMedCrossRef
Zurück zum Zitat Carnevale FA, Leclerc F, Canoui P et al (2006) The moral experience of parents regarding life-support decisions for their critically-ill children: A preliminary study in France. J Child Health Care 10(1):69–82PubMedCrossRef Carnevale FA, Leclerc F, Canoui P et al (2006) The moral experience of parents regarding life-support decisions for their critically-ill children: A preliminary study in France. J Child Health Care 10(1):69–82PubMedCrossRef
Zurück zum Zitat Chacko A, Sly PD, Gauld L (2020) Polysomnography findings in pediatric spinal muscular atrophy types 1–3. Sleep Med 68:124–130PubMedCrossRef Chacko A, Sly PD, Gauld L (2020) Polysomnography findings in pediatric spinal muscular atrophy types 1–3. Sleep Med 68:124–130PubMedCrossRef
Zurück zum Zitat Dal’Astra APL, Quirino AV, Caixêta JAdS et al (2017) Tracheostomy in childhood: review of the literature on complications and mortality over the last three decades. Braz J Otorhinolaryngol 83(2):207-214 Dal’Astra APL, Quirino AV, Caixêta JAdS et al (2017) Tracheostomy in childhood: review of the literature on complications and mortality over the last three decades. Braz J Otorhinolaryngol 83(2):207-214
Zurück zum Zitat Dellon E, Goggin J, Chen E et al (2018) Defining palliative care in cystic fibrosis: a Delphi study. J Cyst Fibros 17(3):416–421PubMedCrossRef Dellon E, Goggin J, Chen E et al (2018) Defining palliative care in cystic fibrosis: a Delphi study. J Cyst Fibros 17(3):416–421PubMedCrossRef
Zurück zum Zitat Dellon EP, Basile M, Hobler MR et al (2020) Palliative care needs of individuals with cystic fibrosis: perspectives of multiple stakeholders. J Palliat Med 23(7):957–963PubMedPubMedCentralCrossRef Dellon EP, Basile M, Hobler MR et al (2020) Palliative care needs of individuals with cystic fibrosis: perspectives of multiple stakeholders. J Palliat Med 23(7):957–963PubMedPubMedCentralCrossRef
Zurück zum Zitat Dohna-Schwake C, Ragette R, Teschler H et al (2006) IPPB-assisted coughing in neuromuscular disorders. Pediatr Pulmonol 41(6):551–557PubMedCrossRef Dohna-Schwake C, Ragette R, Teschler H et al (2006) IPPB-assisted coughing in neuromuscular disorders. Pediatr Pulmonol 41(6):551–557PubMedCrossRef
Zurück zum Zitat Dohna-Schwake C, Podlewski P, Voit T et al (2008) Non-invasive ventilation reduces respiratory tract infections in children with neuromuscular disorders. Pediatr Pulmonol 43(1):67–71PubMedCrossRef Dohna-Schwake C, Podlewski P, Voit T et al (2008) Non-invasive ventilation reduces respiratory tract infections in children with neuromuscular disorders. Pediatr Pulmonol 43(1):67–71PubMedCrossRef
Zurück zum Zitat Eagle M, Baudouin SV, Chandler C et al (2002) Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 12(10):926–929PubMedCrossRef Eagle M, Baudouin SV, Chandler C et al (2002) Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 12(10):926–929PubMedCrossRef
Zurück zum Zitat Earle EA, Clarke SA, Elsar C et al (2006) „Building a new normality“: mothersïexperiences of caring for a child with acute lymphoblastic leukaemia. Child Care Health Dev 33(2):155–160CrossRef Earle EA, Clarke SA, Elsar C et al (2006) „Building a new normality“: mothersïexperiences of caring for a child with acute lymphoblastic leukaemia. Child Care Health Dev 33(2):155–160CrossRef
Zurück zum Zitat Fauroux B, Sardet A, Foret D (1995) Home treatment for chronic respiratory failure in children: a prospective study. Eur Respir J 8(12):2062–2066PubMedCrossRef Fauroux B, Sardet A, Foret D (1995) Home treatment for chronic respiratory failure in children: a prospective study. Eur Respir J 8(12):2062–2066PubMedCrossRef
Zurück zum Zitat Finder JD, Birnkrant D, Carll J et al (2004) Respiratory care of the patient with duchenne muscular dystrophy: ATS consensus statement. Am J Respir Crit Care Med 170(4):456–465PubMedCrossRef Finder JD, Birnkrant D, Carll J et al (2004) Respiratory care of the patient with duchenne muscular dystrophy: ATS consensus statement. Am J Respir Crit Care Med 170(4):456–465PubMedCrossRef
Zurück zum Zitat Finkel RS, Mercuri E, Meyer OH et al (2018) Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord 28(3):197–207PubMedCrossRef Finkel RS, Mercuri E, Meyer OH et al (2018) Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord 28(3):197–207PubMedCrossRef
Zurück zum Zitat Finkel RS, Mercuri E, Darras BT et al. (2017) Nusinersen versus sham control in infantile-onset spinal muscular atrophy. N Engl J Med 377:1723-32 Finkel RS, Mercuri E, Darras BT et al. (2017) Nusinersen versus sham control in infantile-onset spinal muscular atrophy. N Engl J Med 377:1723-32
Zurück zum Zitat Goldberg A (1999) Clinical indications for noninvasive positive pressure ventilation in chronic respiratory failure due to restrictive lung disease, COPD, and nocturnal hypoventilation – a consensus conference report. Chest, 116, S 521–534 Goldberg A (1999) Clinical indications for noninvasive positive pressure ventilation in chronic respiratory failure due to restrictive lung disease, COPD, and nocturnal hypoventilation – a consensus conference report. Chest, 116, S 521–534
Zurück zum Zitat González R, Bustinza A, Fernandez SN et al (2017) Quality of life in home-ventilated children and their families. Eur J Pediatr 176(10):1307–1317PubMedCrossRef González R, Bustinza A, Fernandez SN et al (2017) Quality of life in home-ventilated children and their families. Eur J Pediatr 176(10):1307–1317PubMedCrossRef
Zurück zum Zitat Gozal D (1998) Congenital central hypoventilation syndrome: an update. Pediatr Pulmonol 26(4):273–282PubMedCrossRef Gozal D (1998) Congenital central hypoventilation syndrome: an update. Pediatr Pulmonol 26(4):273–282PubMedCrossRef
Zurück zum Zitat Grychtol R, Chan EY (2018) Use of non-invasive ventilation in cerebral palsy. Arch Dis Child 103(12):1170–1177PubMedCrossRef Grychtol R, Chan EY (2018) Use of non-invasive ventilation in cerebral palsy. Arch Dis Child 103(12):1170–1177PubMedCrossRef
Zurück zum Zitat Guo W, Cao L, Chang L (2019) Clinical characteristics of non-invasive ventilation treatment in children with spinal muscular atrophy and sleep disordered breathing. Zhonghua Er Ke Za Zhi 57(10):792–796PubMed Guo W, Cao L, Chang L (2019) Clinical characteristics of non-invasive ventilation treatment in children with spinal muscular atrophy and sleep disordered breathing. Zhonghua Er Ke Za Zhi 57(10):792–796PubMed
Zurück zum Zitat Hein H, Rasche K, Wiebel M et al (2006) Empfehlung zur Heim-und Langzeitbeatmung. Med Klin 101(2):148–152CrossRef Hein H, Rasche K, Wiebel M et al (2006) Empfehlung zur Heim-und Langzeitbeatmung. Med Klin 101(2):148–152CrossRef
Zurück zum Zitat Hirschfeld S, Exner G, Luukkaala T et al (2008) Mechanical ventilation or phrenic nerve stimulation for treatment of spinal cord injury-induced respiratory insufficiency. Spinal Cord 46(11):738–742PubMedCrossRef Hirschfeld S, Exner G, Luukkaala T et al (2008) Mechanical ventilation or phrenic nerve stimulation for treatment of spinal cord injury-induced respiratory insufficiency. Spinal Cord 46(11):738–742PubMedCrossRef
Zurück zum Zitat Hodson M, Madden B, Steven M et al (1991) Non-invasive mechanical ventilation for cystic fibrosis patients--a potential bridge to transplantation. Eur Respir J 4(5):524–527PubMedCrossRef Hodson M, Madden B, Steven M et al (1991) Non-invasive mechanical ventilation for cystic fibrosis patients--a potential bridge to transplantation. Eur Respir J 4(5):524–527PubMedCrossRef
Zurück zum Zitat Hov B, Andersen T, Hovland V et al (2018) The clinical use of mechanical insufflation-exsufflation in children with neuromuscular disorders in Europe. Paediatr Respir Rev 27:69–73PubMed Hov B, Andersen T, Hovland V et al (2018) The clinical use of mechanical insufflation-exsufflation in children with neuromuscular disorders in Europe. Paediatr Respir Rev 27:69–73PubMed
Zurück zum Zitat Hull J, Aniapravan R, Chan E et al (2012) British Thoracic Society guideline for respiratory management of children with neuromuscular weakness. Thorax 67(Suppl 1):i1–i40PubMedCrossRef Hull J, Aniapravan R, Chan E et al (2012) British Thoracic Society guideline for respiratory management of children with neuromuscular weakness. Thorax 67(Suppl 1):i1–i40PubMedCrossRef
Zurück zum Zitat Ishikawa Y, Bach JR, Komaroff E et al (2008) Cough augmentation in Duchenne muscular dystrophy. Am J Phys Med Rehabil 87(9):726–730PubMedCrossRef Ishikawa Y, Bach JR, Komaroff E et al (2008) Cough augmentation in Duchenne muscular dystrophy. Am J Phys Med Rehabil 87(9):726–730PubMedCrossRef
Zurück zum Zitat Kang S-W, Bach JR (2000) Maximum insufflation capacity: vital capacity and cough flows in neuromuscular disease. Am J Phys Med Rehabil 79(3):222–227PubMedCrossRef Kang S-W, Bach JR (2000) Maximum insufflation capacity: vital capacity and cough flows in neuromuscular disease. Am J Phys Med Rehabil 79(3):222–227PubMedCrossRef
Zurück zum Zitat Kapnadak SG, Dimango E, Hadjiliadis D et al (2020) Cystic Fibrosis Foundation consensus guidelines for the care of individuals with advanced cystic fibrosis lung disease. J Cyst Fibros 19(3):344–354PubMedCrossRef Kapnadak SG, Dimango E, Hadjiliadis D et al (2020) Cystic Fibrosis Foundation consensus guidelines for the care of individuals with advanced cystic fibrosis lung disease. J Cyst Fibros 19(3):344–354PubMedCrossRef
Zurück zum Zitat Kohler M, Clarenbach CF, Böni L et al (2005) Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med 172(8):1032–1036PubMedCrossRef Kohler M, Clarenbach CF, Böni L et al (2005) Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med 172(8):1032–1036PubMedCrossRef
Zurück zum Zitat Konagaya M, Sakai M, Wakayama T et al (2005) Effect of intermittent positive pressure ventilation on life-span and causes of death in Duchenne muscular dystrophy. Rinsho Shinkeigaku 45(9):643–646PubMed Konagaya M, Sakai M, Wakayama T et al (2005) Effect of intermittent positive pressure ventilation on life-span and causes of death in Duchenne muscular dystrophy. Rinsho Shinkeigaku 45(9):643–646PubMed
Zurück zum Zitat Landfeldt E, Thompson R, Sejersen T et al (2020) Life expectancy at birth in Duchenne muscular dystrophy: a systematic review and meta-analysis. Eur J Epidemiol 35(7):643–653PubMedPubMedCentralCrossRef Landfeldt E, Thompson R, Sejersen T et al (2020) Life expectancy at birth in Duchenne muscular dystrophy: a systematic review and meta-analysis. Eur J Epidemiol 35(7):643–653PubMedPubMedCentralCrossRef
Zurück zum Zitat Leger P, Paulus J (2006) [Recommendations of HAS: practical issues in home non-invasive ventilation in patients with neuromuscular disease]. Revue de maladies repiratoires 23(4 Suppl):13s141-3 Leger P, Paulus J (2006) [Recommendations of HAS: practical issues in home non-invasive ventilation in patients with neuromuscular disease]. Revue de maladies repiratoires 23(4 Suppl):13s141-3
Zurück zum Zitat Li KK, Riley RW, Guilleminault C (2000) An unreported risk in the use of home nasal continuous positive airway pressure and home nasal ventilation in children. Chest 117(3):916–918PubMedCrossRef Li KK, Riley RW, Guilleminault C (2000) An unreported risk in the use of home nasal continuous positive airway pressure and home nasal ventilation in children. Chest 117(3):916–918PubMedCrossRef
Zurück zum Zitat Lloyd-Owen S, Donaldson G, Ambrosino N et al (2005) Patterns of home mechanical ventilation use in Europe: results from the Eurovent survey. Eur Respir J 25(6):1025–1031PubMedCrossRef Lloyd-Owen S, Donaldson G, Ambrosino N et al (2005) Patterns of home mechanical ventilation use in Europe: results from the Eurovent survey. Eur Respir J 25(6):1025–1031PubMedCrossRef
Zurück zum Zitat Luo J, Duke T, Chisti MJ et al (2019) Efficacy of high-flow nasal cannula vs standard oxygen therapy or nasal continuous positive airway pressure in children with respiratory distress: a meta-analysis. J Pediatr 215:199–208.e8 Luo J, Duke T, Chisti MJ et al (2019) Efficacy of high-flow nasal cannula vs standard oxygen therapy or nasal continuous positive airway pressure in children with respiratory distress: a meta-analysis. J Pediatr 215:199–208.e8
Zurück zum Zitat Manni R, Ottolini A, Cerveri I et al (1989) Breathing patterns and HbSaO 2 changes during nocturnal sleep in patients with Duchenne muscular dystrophy. J Neurol 236(7):391–394PubMedCrossRef Manni R, Ottolini A, Cerveri I et al (1989) Breathing patterns and HbSaO 2 changes during nocturnal sleep in patients with Duchenne muscular dystrophy. J Neurol 236(7):391–394PubMedCrossRef
Zurück zum Zitat Mellies U, Dohna-Schwake C (2005) Intermittierende Selbstbeatmung in der Pädiatrie. In: Schönhofer B (Hrsg) Nichinvasive Beatmung. Ecomed, Heidelberg Mellies U, Dohna-Schwake C (2005) Intermittierende Selbstbeatmung in der Pädiatrie. In: Schönhofer B (Hrsg) Nichinvasive Beatmung. Ecomed, Heidelberg
Zurück zum Zitat Mellies U, Goebel C (2014) Optimum insufflation capacity and peak cough flow in neuromuscular disorders. Ann Am Thorac Soc 11(10):1560–1568PubMedCrossRef Mellies U, Goebel C (2014) Optimum insufflation capacity and peak cough flow in neuromuscular disorders. Ann Am Thorac Soc 11(10):1560–1568PubMedCrossRef
Zurück zum Zitat Mellies U, Ragette R, Schwake C et al (2003a) Daytime predictors of sleep disordered breathing in children and adolescents with neuromuscular disorders. Neuromuscul Disord 13:123–128PubMedCrossRef Mellies U, Ragette R, Schwake C et al (2003a) Daytime predictors of sleep disordered breathing in children and adolescents with neuromuscular disorders. Neuromuscul Disord 13:123–128PubMedCrossRef
Zurück zum Zitat Mellies U, Ragette R, Schwake CD et al (2003b) Longterm noninvasive ventilation in children and adolescents with neuromuscular disorders. Eur Respir J 22(4):631–636PubMedCrossRef Mellies U, Ragette R, Schwake CD et al (2003b) Longterm noninvasive ventilation in children and adolescents with neuromuscular disorders. Eur Respir J 22(4):631–636PubMedCrossRef
Zurück zum Zitat Mellies U, Dohna-Schwake C, Stehling F et al (2004) Sleep disordered breathing in spinal muscular atrophy. Neuromuscul Disord 14(12):797–803PubMedCrossRef Mellies U, Dohna-Schwake C, Stehling F et al (2004) Sleep disordered breathing in spinal muscular atrophy. Neuromuscul Disord 14(12):797–803PubMedCrossRef
Zurück zum Zitat Mellies U, Dohna-Schwake C, Voit T (2005) Respiratory function assessment and intervention in neuromuscular disorders. Curr Opin Neurol 18(5):543–547PubMedCrossRef Mellies U, Dohna-Schwake C, Voit T (2005) Respiratory function assessment and intervention in neuromuscular disorders. Curr Opin Neurol 18(5):543–547PubMedCrossRef
Zurück zum Zitat Mercuri E, Darras BT, Chiriboga CA et al (2018) Nusinersen versus sham control in later-onset spinal muscular atrophy. N Engl J Med 378(7):625–635PubMedCrossRef Mercuri E, Darras BT, Chiriboga CA et al (2018) Nusinersen versus sham control in later-onset spinal muscular atrophy. N Engl J Med 378(7):625–635PubMedCrossRef
Zurück zum Zitat Moran F, Bradley JM, Piper AJ (2017) Non-invasive ventilation for cystic fibrosis. Cochrane Database Syst Rev(2):CD002769.pub5 Moran F, Bradley JM, Piper AJ (2017) Non-invasive ventilation for cystic fibrosis. Cochrane Database Syst Rev(2):CD002769.pub5
Zurück zum Zitat Narayanaswami P, Bertorini TE, Pourmand R et al (2000) Long-term tracheostomy ventilation in neuromuscular diseases: patient acceptance and quality of life. Neurorehabil Neural Repair 14(2):135–139PubMedCrossRef Narayanaswami P, Bertorini TE, Pourmand R et al (2000) Long-term tracheostomy ventilation in neuromuscular diseases: patient acceptance and quality of life. Neurorehabil Neural Repair 14(2):135–139PubMedCrossRef
Zurück zum Zitat Nygren-Bonnier M, Markström A, Lindholm P et al (2009) Glossopharyngeal pistoning for lung insufflation in children with spinal muscular atrophy type II. Acta Paediatr 98(8):1324–1328PubMedCrossRef Nygren-Bonnier M, Markström A, Lindholm P et al (2009) Glossopharyngeal pistoning for lung insufflation in children with spinal muscular atrophy type II. Acta Paediatr 98(8):1324–1328PubMedCrossRef
Zurück zum Zitat Paditz E, Zieger S, Bickhardt J et al (2000) Lebensqualität unter Heimbeatmung im Kindes-, Jugend-und jungen Erwachsenenalter: unterschiedliche Sichtweisen von Eltern und Kindern. Somnologie 4(1):13–19CrossRef Paditz E, Zieger S, Bickhardt J et al (2000) Lebensqualität unter Heimbeatmung im Kindes-, Jugend-und jungen Erwachsenenalter: unterschiedliche Sichtweisen von Eltern und Kindern. Somnologie 4(1):13–19CrossRef
Zurück zum Zitat Pavone M, Verrillo E, Onofri A et al (2020) Characteristics and outcomes in children on long-term mechanical ventilation: the experience of a pediatric tertiary center in Rome. Ital J Pediatr 46(1):12PubMedPubMedCentralCrossRef Pavone M, Verrillo E, Onofri A et al (2020) Characteristics and outcomes in children on long-term mechanical ventilation: the experience of a pediatric tertiary center in Rome. Ital J Pediatr 46(1):12PubMedPubMedCentralCrossRef
Zurück zum Zitat Phillips MF, Smith PE, Carroll N et al (1999) Nocturnal oxygenation and prognosis in Duchenne muscular dystrophy. Am J Respir Crit Care Med 160(1):198–202PubMedCrossRef Phillips MF, Smith PE, Carroll N et al (1999) Nocturnal oxygenation and prognosis in Duchenne muscular dystrophy. Am J Respir Crit Care Med 160(1):198–202PubMedCrossRef
Zurück zum Zitat Pinto T, Chatwin M, Banfi P et al (2017) Mouthpiece ventilation and complementary techniques in patients with neuromuscular disease: a brief clinical review and update. Chron Respir Dis 14(2):187-93 Pinto T, Chatwin M, Banfi P et al (2017) Mouthpiece ventilation and complementary techniques in patients with neuromuscular disease: a brief clinical review and update. Chron Respir Dis 14(2):187-93
Zurück zum Zitat Rideau Y, Jankowski L, Grellet J (1981) Respiratory function in the muscular dystrophies. Muscle Nerve 4(2):155–164PubMedCrossRef Rideau Y, Jankowski L, Grellet J (1981) Respiratory function in the muscular dystrophies. Muscle Nerve 4(2):155–164PubMedCrossRef
Zurück zum Zitat Romero F, Gambarrutta C, Garcia-Forcada A et al (2012) Long-term evaluation of phrenic nerve pacing for respiratory failure due to high cervical spinal cord injury. Spinal Cord 50(12):895–898PubMedCrossRef Romero F, Gambarrutta C, Garcia-Forcada A et al (2012) Long-term evaluation of phrenic nerve pacing for respiratory failure due to high cervical spinal cord injury. Spinal Cord 50(12):895–898PubMedCrossRef
Zurück zum Zitat Simonds A, Muntoni F, Heather S et al (1998) Impact of nasal ventilation on survival in hypercapnic Duchenne muscular dystrophy. Thorax 53(11):949–952PubMedPubMedCentralCrossRef Simonds A, Muntoni F, Heather S et al (1998) Impact of nasal ventilation on survival in hypercapnic Duchenne muscular dystrophy. Thorax 53(11):949–952PubMedPubMedCentralCrossRef
Zurück zum Zitat Simonds AK (2004) Living and dying with respiratory failure: facilitating decision making. Chron Respir Dis 1(1):56–59PubMedCrossRef Simonds AK (2004) Living and dying with respiratory failure: facilitating decision making. Chron Respir Dis 1(1):56–59PubMedCrossRef
Zurück zum Zitat Simonds AK (2005) Ethical aspects of home long term ventilation in children with neuromuscular disease. Paediatr Respir Rev 6:209–214PubMedCrossRef Simonds AK (2005) Ethical aspects of home long term ventilation in children with neuromuscular disease. Paediatr Respir Rev 6:209–214PubMedCrossRef
Zurück zum Zitat Simonds AK, Ward S, Heather S et al (2000) Outcome of paediatric domicilliary mask ventilation in neuromuscular and skeletal disease. Eur Respir J 16(3):476–481PubMedCrossRef Simonds AK, Ward S, Heather S et al (2000) Outcome of paediatric domicilliary mask ventilation in neuromuscular and skeletal disease. Eur Respir J 16(3):476–481PubMedCrossRef
Zurück zum Zitat Sivasothy P, Brown L, Smith I et al (2001) Effect of manually assisted cough and mechanical insufflation on cough flow of normal subjects, patients with chronic obstructive pulmonary disease (COPD), and patients with respiratory muscle weakness. Thorax 56(6):438–444PubMedPubMedCentralCrossRef Sivasothy P, Brown L, Smith I et al (2001) Effect of manually assisted cough and mechanical insufflation on cough flow of normal subjects, patients with chronic obstructive pulmonary disease (COPD), and patients with respiratory muscle weakness. Thorax 56(6):438–444PubMedPubMedCentralCrossRef
Zurück zum Zitat Smith PE, Calverley PM, Edwards RH (1988) Hypoxemia during sleep in Duchenne muscular dystrophy. Am J Respir Crit Care Med 137(4):884–888 Smith PE, Calverley PM, Edwards RH (1988) Hypoxemia during sleep in Duchenne muscular dystrophy. Am J Respir Crit Care Med 137(4):884–888
Zurück zum Zitat Tzeng A, Bach JR (2000) Preventing pulmonary morbidity for patients with neuromuscular disease. Chest 118:1390–1396PubMedCrossRef Tzeng A, Bach JR (2000) Preventing pulmonary morbidity for patients with neuromuscular disease. Chest 118:1390–1396PubMedCrossRef
Zurück zum Zitat Vianello A, Bevilacqua M, Salvador V et al (1994) Long-term nasal intermittent positive pressure ventilation in advanced Duchenne’s muscular dystrophy. Chest 105(2):445–448PubMedCrossRef Vianello A, Bevilacqua M, Salvador V et al (1994) Long-term nasal intermittent positive pressure ventilation in advanced Duchenne’s muscular dystrophy. Chest 105(2):445–448PubMedCrossRef
Zurück zum Zitat Vianello A, Corrado A, Arcaro G et al (2005) Mechanical insufflation–exsufflation improves outcomes for neuromuscular disease patients with respiratory tract infections. Am J Phys Med Rehabil 84(2):83–88PubMedCrossRef Vianello A, Corrado A, Arcaro G et al (2005) Mechanical insufflation–exsufflation improves outcomes for neuromuscular disease patients with respiratory tract infections. Am J Phys Med Rehabil 84(2):83–88PubMedCrossRef
Zurück zum Zitat Villa MP, Pagani J, Ambrosio R et al (2002) Mid-face hypoplasia after long-term nasal ventilation. Am J Respir Crit Care Med 166(8):1142–1143PubMedCrossRef Villa MP, Pagani J, Ambrosio R et al (2002) Mid-face hypoplasia after long-term nasal ventilation. Am J Respir Crit Care Med 166(8):1142–1143PubMedCrossRef
Zurück zum Zitat Wadman RI, van der Pol WL, Bosboom WMJ et al (2019) Drug treatment for spinal muscular atrophy type I. Cochrane Database Syst Rev(12):CD006281.pub5 Wadman RI, van der Pol WL, Bosboom WMJ et al (2019) Drug treatment for spinal muscular atrophy type I. Cochrane Database Syst Rev(12):CD006281.pub5
Zurück zum Zitat Wallgren-Pettersson C, Bushby K, Mellies U et al (2004) 117th ENMC workshop: ventilatory support in congenital neuromuscular disorders – congenital myopathies, congenital muscular dystrophies, congenital myotonic dystrophy and SMA (II) 4–6 April 2003, Naarden, The Netherlands. Neuromuscul Disord 14(1):56–69PubMedCrossRef Wallgren-Pettersson C, Bushby K, Mellies U et al (2004) 117th ENMC workshop: ventilatory support in congenital neuromuscular disorders – congenital myopathies, congenital muscular dystrophies, congenital myotonic dystrophy and SMA (II) 4–6 April 2003, Naarden, The Netherlands. Neuromuscul Disord 14(1):56–69PubMedCrossRef
Zurück zum Zitat Weese-Mayer DE, Berry-Kravis EM, Ceccherini I et al (2010) An official ATS clinical policy statement: congenital central hypoventilation syndrome: genetic basis, diagnosis, and management. Am J Respir Crit Care Med 181(6):626–644PubMedCrossRef Weese-Mayer DE, Berry-Kravis EM, Ceccherini I et al (2010) An official ATS clinical policy statement: congenital central hypoventilation syndrome: genetic basis, diagnosis, and management. Am J Respir Crit Care Med 181(6):626–644PubMedCrossRef
Zurück zum Zitat Windisch W, Walterspacher S, Siemon K et al (2010) Guidelines for non-invasive and invasive mechanical ventilation for treatment of chronic respiratory failure. Pneumologie 64(10):640–652PubMedCrossRef Windisch W, Walterspacher S, Siemon K et al (2010) Guidelines for non-invasive and invasive mechanical ventilation for treatment of chronic respiratory failure. Pneumologie 64(10):640–652PubMedCrossRef
Zurück zum Zitat Windisch W, Dreher M, Geiseler J et al (2017) S2k-leitlinie: Nichtinvasive und invasive Beatmung als Therapie der chronischen respiratorischen Insuffizienz–Revision 2017. Pneumologie 71(11):722–795PubMedCrossRef Windisch W, Dreher M, Geiseler J et al (2017) S2k-leitlinie: Nichtinvasive und invasive Beatmung als Therapie der chronischen respiratorischen Insuffizienz–Revision 2017. Pneumologie 71(11):722–795PubMedCrossRef
Zurück zum Zitat Zerres K, Wirth B, Rudnik-Schöneborn S (1997) Spinal muscular atrophy – clinical and genetic correlations. Neuromuscul Disord 7(3):202–207PubMedCrossRef Zerres K, Wirth B, Rudnik-Schöneborn S (1997) Spinal muscular atrophy – clinical and genetic correlations. Neuromuscul Disord 7(3):202–207PubMedCrossRef
Zurück zum Zitat Anderson BT, Feinstein JA, Kramer RE et al (2018) The approach and safety of esophageal dilation for treatment of strictures in children with epidermolysis bullosa. J Pediatr Gastroenterol Nutr 67(6):701–05 Anderson BT, Feinstein JA, Kramer RE et al (2018) The approach and safety of esophageal dilation for treatment of strictures in children with epidermolysis bullosa. J Pediatr Gastroenterol Nutr 67(6):701–05
Zurück zum Zitat Beissenhirtz A, Hübner-Möhler B (2018) Epidermolysis bullosa (EB) - Tipps zum Umgang mit Schmerzen beim Verbandswechsel. Schmerz Schmerzmanagement 2(2):19 Beissenhirtz A, Hübner-Möhler B (2018) Epidermolysis bullosa (EB) - Tipps zum Umgang mit Schmerzen beim Verbandswechsel. Schmerz Schmerzmanagement 2(2):19
Zurück zum Zitat Bodán RC (2016) Epidermolysis bullosa: an insider’s perspective to a rare genetic connective tissue disorder. J Dermatol Nurses Assoc 8(1):46-56 Bodán RC (2016) Epidermolysis bullosa: an insider’s perspective to a rare genetic connective tissue disorder. J Dermatol Nurses Assoc 8(1):46-56
Zurück zum Zitat Bruckner-Tuderman L (2019) Newer treatment modalities in Epidermolysis bullosa. Indian Dermatol Online J 10(3):244-50 Bruckner-Tuderman L (2019) Newer treatment modalities in Epidermolysis bullosa. Indian Dermatol Online J 10(3):244-50
Zurück zum Zitat Brun J, Chiaverini C, Devos C et al (2017) Pain and quality of life evaluation in patients with localized epidermolysis bullosa simplex. Orphanet J Rare Dis 12(1):119 Brun J, Chiaverini C, Devos C et al (2017) Pain and quality of life evaluation in patients with localized epidermolysis bullosa simplex. Orphanet J Rare Dis 12(1):119
Zurück zum Zitat Chiu YK, Prendiville JS, Bennett SM et al (1999) Pain management of junctional Epidermolysis bullosa in an 11-year-old boy. Pediatr Dermatol 16(6):465–468 Chiu YK, Prendiville JS, Bennett SM et al (1999) Pain management of junctional Epidermolysis bullosa in an 11-year-old boy. Pediatr Dermatol 16(6):465–468
Zurück zum Zitat Feinstein JA, Jambal P, Peoples K et al (2019) Assessment of the timing of milestone clinical events in patients with epidermolysis bullosa from North America. JAMA dermatology 155(2):196–203 Feinstein JA, Jambal P, Peoples K et al (2019) Assessment of the timing of milestone clinical events in patients with epidermolysis bullosa from North America. JAMA dermatology 155(2):196–203
Zurück zum Zitat Fine JD, Bruckner-Tuderman L, Eady RA et al (2014) Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification. J Am Acad Dermatol 70(6):1103–1126 Fine JD, Bruckner-Tuderman L, Eady RA et al (2014) Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification. J Am Acad Dermatol 70(6):1103–1126
Zurück zum Zitat Fine JD, Johnson LB, Weiner M et al (2004) Assessment of mobility, activities and pain different subtypes of epidermolysis bullosa. Clin Exp Dermatol 29(2):122–127 Fine JD, Johnson LB, Weiner M et al (2004) Assessment of mobility, activities and pain different subtypes of epidermolysis bullosa. Clin Exp Dermatol 29(2):122–127
Zurück zum Zitat Fine J-D, Eady R, Bauer E et al (2008) The classification of inherited epidermolysis bullosa (EB): report of the third international consensus meeting on diagnosis and classification of EB Fine J-D, Eady R, Bauer E et al (2008) The classification of inherited epidermolysis bullosa (EB): report of the third international consensus meeting on diagnosis and classification of EB
Zurück zum Zitat Goldschneider KR, Good J, Harrop E et al (2014) Pain care for patients with epidermolysis bullosa: best care practice guidelines. BMC Med 12(1):178 Goldschneider KR, Good J, Harrop E et al (2014) Pain care for patients with epidermolysis bullosa: best care practice guidelines. BMC Med 12(1):178
Zurück zum Zitat Gottschalk A, Venherm S, Vowinkel T et al (2010) Anesthesia for balloon dilatation of esophageal strictures in children with epidermolysis bullosa dystrophica: from intubation to sedation. Curr Opin Anaesthesiol 23(4):518-522 Gottschalk A, Venherm S, Vowinkel T et al (2010) Anesthesia for balloon dilatation of esophageal strictures in children with epidermolysis bullosa dystrophica: from intubation to sedation. Curr Opin Anaesthesiol 23(4):518-522
Zurück zum Zitat Hartenstein-Pinter A, Hübner-Möhler B, Zernikow B et al (2020) Verbandsmaterial bei Kindern mit Epidermolysis bullosa. Eine qualitative Studie zu den Erfahrungen von Eltern und betroffenen. Kindern Schmerz 34:156-165 Hartenstein-Pinter A, Hübner-Möhler B, Zernikow B et al (2020) Verbandsmaterial bei Kindern mit Epidermolysis bullosa. Eine qualitative Studie zu den Erfahrungen von Eltern und betroffenen. Kindern Schmerz 34:156-165
Zurück zum Zitat Has C, Bauer JW, Bodemer C et al (2020) Consensus re-classification of inherited epidermolysis bullosa and other disorders with skin fragility. Br J Dermatol epub ahead of print Has C, Bauer JW, Bodemer C et al (2020) Consensus re-classification of inherited epidermolysis bullosa and other disorders with skin fragility. Br J Dermatol epub ahead of print
Zurück zum Zitat Haynes LSRD, Atherton D, Clayden G (1997) Constipation in epidermolysis bullosa: successful treatment with a liquid fiber-containing formula. Pediatr Dermatol 14(5):393 Haynes LSRD, Atherton D, Clayden G (1997) Constipation in epidermolysis bullosa: successful treatment with a liquid fiber-containing formula. Pediatr Dermatol 14(5):393
Zurück zum Zitat Herod J, Denyer J, Goldman A et al (2002) Epidermolysis bullosa in children: pathophysiologie, anaesthesia and pain management. Paediatr Anaesth 12:388-397 Herod J, Denyer J, Goldman A et al (2002) Epidermolysis bullosa in children: pathophysiologie, anaesthesia and pain management. Paediatr Anaesth 12:388-397
Zurück zum Zitat Jacków J, Guo Z, Hansen C et al (2019) CRISPR/Cas9-based targeted genome editing for correction of recessive dystrophic epidermolysis bullosa using iPS cells. Proc Natl Acad Sci U S A 116(52):26846–26852 Jacków J, Guo Z, Hansen C et al (2019) CRISPR/Cas9-based targeted genome editing for correction of recessive dystrophic epidermolysis bullosa using iPS cells. Proc Natl Acad Sci U S A 116(52):26846–26852
Zurück zum Zitat Krämer SM, Serrano MC, Zillmann G et al (2012) Oral health care for patients with epidermolysis bullosa - best clinical practice guidelines. Int J Paediatr Dent 22(s1):1-35 Krämer SM, Serrano MC, Zillmann G et al (2012) Oral health care for patients with epidermolysis bullosa - best clinical practice guidelines. Int J Paediatr Dent 22(s1):1-35
Zurück zum Zitat Küchler S, Wolf NB, Heilmann S et al (2010) 3D-wound healing model: influence of morphine and solid lipid nanoparticles. J Biotechnol 148(1):24-30 Küchler S, Wolf NB, Heilmann S et al (2010) 3D-wound healing model: influence of morphine and solid lipid nanoparticles. J Biotechnol 148(1):24-30
Zurück zum Zitat Lin Y-C, Golianu B (2006) Anesthesia and pain management for pediatric patients with dystrophic epidermolysis bullosa. J Clin Anesth 18(4):268–271 Lin Y-C, Golianu B (2006) Anesthesia and pain management for pediatric patients with dystrophic epidermolysis bullosa. J Clin Anesth 18(4):268–271
Zurück zum Zitat Margari F, Lecce PA, Santamato W et al (2010) Psychiatric symptoms and quality of life in patients affected by Epidermolysis bullosa. J Clin Psychol Med Settings 17(4):333–339 Margari F, Lecce PA, Santamato W et al (2010) Psychiatric symptoms and quality of life in patients affected by Epidermolysis bullosa. J Clin Psychol Med Settings 17(4):333–339
Zurück zum Zitat Martin K, Geuens S, Asche JK et al (2019) Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines. Orphanet J Rare Dis 14(1):133 Martin K, Geuens S, Asche JK et al (2019) Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines. Orphanet J Rare Dis 14(1):133
Zurück zum Zitat Petersen BW, Arbuckle HA, Berman S (2015) Effectiveness of saltwater baths in the treatment of epidermolysis bullosa. Pediatr Dermatol 32(1):60–63 Petersen BW, Arbuckle HA, Berman S (2015) Effectiveness of saltwater baths in the treatment of epidermolysis bullosa. Pediatr Dermatol 32(1):60–63
Zurück zum Zitat Rashidghamat E, Kadiyirire T, Ayis S et al (2019) A phase I/II open-label trial of intravenous allogeneic mesenchymal stromal cell therapy in adults with recessive dystrophic epidermolysis bullosa. J Am Acad Dermatol [Epub ahead of print] Rashidghamat E, Kadiyirire T, Ayis S et al (2019) A phase I/II open-label trial of intravenous allogeneic mesenchymal stromal cell therapy in adults with recessive dystrophic epidermolysis bullosa. J Am Acad Dermatol [Epub ahead of print]
Zurück zum Zitat Reimer A, Bruckner-Tuderman L, Ott H (2018) Mapping health care of rare diseases: the example of Epidermolysis bullosa in Germany. Orphanet J Rare Dis 13(1):197 Reimer A, Bruckner-Tuderman L, Ott H (2018) Mapping health care of rare diseases: the example of Epidermolysis bullosa in Germany. Orphanet J Rare Dis 13(1):197
Zurück zum Zitat van Scheppingen C, Lettinga AT, Duipmans JC et al (2008a) The main problems of parents of a child with epidermolysis bullosa. Qual Health Res 18(4):545–556 van Scheppingen C, Lettinga AT, Duipmans JC et al (2008a) The main problems of parents of a child with epidermolysis bullosa. Qual Health Res 18(4):545–556
Zurück zum Zitat van Scheppingen C, Lettinga AT, Duipmans JC et al (2008b) Main problems experienced by children with Epidermolysis bullosa: a qualitative study with semi-structured interviews. Acta Derm Venereol 88(2):143–150 van Scheppingen C, Lettinga AT, Duipmans JC et al (2008b) Main problems experienced by children with Epidermolysis bullosa: a qualitative study with semi-structured interviews. Acta Derm Venereol 88(2):143–150
Zurück zum Zitat Stein C, Küchler S (2013) Targeting inflammation and wound healing by opioids. Trends Pharmacol Sci 34(6):303–312 Stein C, Küchler S (2013) Targeting inflammation and wound healing by opioids. Trends Pharmacol Sci 34(6):303–312
Zurück zum Zitat Van den Heuvel I, Boschin M, Langer M et al (2013) Anesthetic management in pediatric patients with epidermolysis bullosa: a single center experience. Minerva Anestesiol 79(7):727–732 Van den Heuvel I, Boschin M, Langer M et al (2013) Anesthetic management in pediatric patients with epidermolysis bullosa: a single center experience. Minerva Anestesiol 79(7):727–732
Zurück zum Zitat Williams EF, Gannon K, Soon K (2011) The experiences of young people with epidermolysis bullosa simplex: a qualitative study. J Health Psychol 16(5):701–710 Williams EF, Gannon K, Soon K (2011) The experiences of young people with epidermolysis bullosa simplex: a qualitative study. J Health Psychol 16(5):701–710
Zurück zum Zitat Zernikow B (Hrsg) (2021) Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle. Springer, Berlin/Heidelberg Zernikow B (Hrsg) (2021) Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle. Springer, Berlin/Heidelberg
Zurück zum Zitat Allegranzi B, Pittet D (2009) Role of hand hygiene in healthcare-associated infection prevention. J Hosp Infect 73(4):305–315PubMedCrossRef Allegranzi B, Pittet D (2009) Role of hand hygiene in healthcare-associated infection prevention. J Hosp Infect 73(4):305–315PubMedCrossRef
Zurück zum Zitat Arbeitsgruppe der Deutschen Gesellschaft für Pädiatrische Infektiologie, Paed IC Projekt (2014) Infektionspräventives Vorgehen bei Nachweis von MRGN im Kindesalter. Hyg Med 39(10):392–399 Arbeitsgruppe der Deutschen Gesellschaft für Pädiatrische Infektiologie, Paed IC Projekt (2014) Infektionspräventives Vorgehen bei Nachweis von MRGN im Kindesalter. Hyg Med 39(10):392–399
Zurück zum Zitat Bundesministerium der Justiz und für Verbraucherschutz, Bundesamt für Justiz (2000) Gesetz zur Verhütung und Bekämpfung von Infektionskrankheiten beim Menschen (Infektionsschutzgesetz – IfSG). Bundesgesetzblatt 1:1045. https://www.gesetze-im-internet.de/ifsg/. Zugegriffen am 21.03.2020 Bundesministerium der Justiz und für Verbraucherschutz, Bundesamt für Justiz (2000) Gesetz zur Verhütung und Bekämpfung von Infektionskrankheiten beim Menschen (Infektionsschutzgesetz – IfSG). Bundesgesetzblatt 1:1045. https://​www.​gesetze-im-internet.​de/​ifsg/​. Zugegriffen am 21.03.2020
Zurück zum Zitat Chen Y-C, Lin C-F, Rehn Y-JF et al (2017) Reduced nosocomial infection rate in a neonatal intensive care unit during a 4-year surveillance period. J Chin Med Assoc 80(7):427–431PubMedCrossRef Chen Y-C, Lin C-F, Rehn Y-JF et al (2017) Reduced nosocomial infection rate in a neonatal intensive care unit during a 4-year surveillance period. J Chin Med Assoc 80(7):427–431PubMedCrossRef
Zurück zum Zitat Dancer SJ (2009) The role of environmental cleaning in the control of hospital-acquired infection. J Hosp Infect 73(4):378–385PubMedCrossRef Dancer SJ (2009) The role of environmental cleaning in the control of hospital-acquired infection. J Hosp Infect 73(4):378–385PubMedCrossRef
Zurück zum Zitat Dancer SJ (2010) Control of transmission of infection in hospitals requires more than clean hands. Infect Control Hosp Epidemiol 31(9):958–960PubMedCrossRef Dancer SJ (2010) Control of transmission of infection in hospitals requires more than clean hands. Infect Control Hosp Epidemiol 31(9):958–960PubMedCrossRef
Zurück zum Zitat Day HR, Perencevich EN, Harris AD et al (2011) Do contact precautions cause depression? A two-year study at a tertiary care medical centre. J Hosp Infect 79(2):103–104PubMedPubMedCentralCrossRef Day HR, Perencevich EN, Harris AD et al (2011) Do contact precautions cause depression? A two-year study at a tertiary care medical centre. J Hosp Infect 79(2):103–104PubMedPubMedCentralCrossRef
Zurück zum Zitat Donskey CJ (2004) The role of the intestinal tract as a reservoir and source for transmission of nosocomial pathogens. Clin Infect Dis 39(2):219PubMedCrossRef Donskey CJ (2004) The role of the intestinal tract as a reservoir and source for transmission of nosocomial pathogens. Clin Infect Dis 39(2):219PubMedCrossRef
Zurück zum Zitat Erasmus V, Daha TJ, Brug H et al (2010) Systematic review of studies on compliance with hand hygiene guidelines in hospital care. Infect Control Hosp Epidemiol 31(3):283–294PubMedCrossRef Erasmus V, Daha TJ, Brug H et al (2010) Systematic review of studies on compliance with hand hygiene guidelines in hospital care. Infect Control Hosp Epidemiol 31(3):283–294PubMedCrossRef
Zurück zum Zitat Giannini MA, Nance D, McCullers JA (2009) Are toilet seats a vector for transmission of methicillin-resistant Staphylococcus aureus? Am J Infect Control 37(6):505–506PubMedPubMedCentralCrossRef Giannini MA, Nance D, McCullers JA (2009) Are toilet seats a vector for transmission of methicillin-resistant Staphylococcus aureus? Am J Infect Control 37(6):505–506PubMedPubMedCentralCrossRef
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention beim Robert-Koch-Institut (2008) Kommentar zu den Empfehlungen zur Prävention und Kontrolle von MRSA-Stämmen in Krankenhäusern und anderen medizinischen Einrichtungen. Hinweise zu Risikopopulationen für die Kolonisation mit MRSA. Epidemiologisches Bulletin des Robert-Koch-Instituts, Berlin, S 363–364. Kommission für Krankenhaushygiene und Infektionsprävention beim Robert-Koch-Institut (2008) Kommentar zu den Empfehlungen zur Prävention und Kontrolle von MRSA-Stämmen in Krankenhäusern und anderen medizinischen Einrichtungen. Hinweise zu Risikopopulationen für die Kolonisation mit MRSA. Epidemiologisches Bulletin des Robert-Koch-Instituts, Berlin, S 363–364.
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) (2020) Surveillance von nosokomialen Infektionen. Bundesgesundheitsblatt-Gesundheitsforschung-Gesundheitsschutz 2:228 Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) (2020) Surveillance von nosokomialen Infektionen. Bundesgesundheitsblatt-Gesundheitsforschung-Gesundheitsschutz 2:228
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) beim Robert Koch-Institut (RKI) (2016) Händehygiene in Einrichtungen des Gesundheitswesens. Bundesgesundheitsblatt-Gesundheitsforschung-Gesundheitsschutz 9:1189 Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) beim Robert Koch-Institut (RKI) (2016) Händehygiene in Einrichtungen des Gesundheitswesens. Bundesgesundheitsblatt-Gesundheitsforschung-Gesundheitsschutz 9:1189
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2002) Ausbruchsmanagement und strukturiertes Vorgehen bei gehäuftem Auftreten nosokomialer Infektionen Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert Koch-Institut. Bundesgesundheitsblatt 45:180–186CrossRef Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2002) Ausbruchsmanagement und strukturiertes Vorgehen bei gehäuftem Auftreten nosokomialer Infektionen Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert Koch-Institut. Bundesgesundheitsblatt 45:180–186CrossRef
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2009) Personelle und organisatorische Voraussetzungen zur Prävention nosokomialer Infektionen - Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention. Bundesgesundheitsbl 53:951–962 Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2009) Personelle und organisatorische Voraussetzungen zur Prävention nosokomialer Infektionen - Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention. Bundesgesundheitsbl 53:951–962
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2011) Definition der Multiresistenz gegenüber Antibiotika bei gramnegativen Stäbchen im Hinblick auf Maßnahmen zur Vermeidung der Weiterverbreitung, Bd 36. Epidemiologisches Bulletin des Robert-Koch-Instituts Berlin:337–339 Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2011) Definition der Multiresistenz gegenüber Antibiotika bei gramnegativen Stäbchen im Hinblick auf Maßnahmen zur Vermeidung der Weiterverbreitung, Bd 36. Epidemiologisches Bulletin des Robert-Koch-Instituts Berlin:337–339
Zurück zum Zitat Kramer A, Christiansen B, Exner M et al (2000) Händehygiene. Mitteilung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert-Koch-Institut. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz 43:230–233 Kramer A, Christiansen B, Exner M et al (2000) Händehygiene. Mitteilung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert-Koch-Institut. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz 43:230–233
Zurück zum Zitat Kramer A, Schwebke I, Kampf G (2006) How long do nosocomial pathogens persist on inanimate surfaces? A systematic review. BMC Infect Dis 6(1):130PubMedPubMedCentralCrossRef Kramer A, Schwebke I, Kampf G (2006) How long do nosocomial pathogens persist on inanimate surfaces? A systematic review. BMC Infect Dis 6(1):130PubMedPubMedCentralCrossRef
Zurück zum Zitat Lambe KA, Lydon S, Madden C et al (2019) Hand hygiene compliance in the ICU: a systematic review. Crit Care Med Lambe KA, Lydon S, Madden C et al (2019) Hand hygiene compliance in the ICU: a systematic review. Crit Care Med
Zurück zum Zitat Lund-Nielsen B, Adamsen L, Gottrup F et al (2011) Qualitative bacteriology in malignant wounds – a prospective, randomized, clinical study to compare the effect of honey and silver dressings. Ostomy Wound Manage 57(7):28PubMed Lund-Nielsen B, Adamsen L, Gottrup F et al (2011) Qualitative bacteriology in malignant wounds – a prospective, randomized, clinical study to compare the effect of honey and silver dressings. Ostomy Wound Manage 57(7):28PubMed
Zurück zum Zitat Mohr Edokpolo C (2011) Multiresistente Erreger in Langzeitpflegeeinrichtungen. Hyg Med 36(3):81 Mohr Edokpolo C (2011) Multiresistente Erreger in Langzeitpflegeeinrichtungen. Hyg Med 36(3):81
Zurück zum Zitat Pittet D, Panesar S, Wilson K et al (2011) Involving the patient to ask about hospital hand hygiene: a National Patient Safety Agency feasibility study. J Hosp Infect 77(4):299–303PubMedCrossRef Pittet D, Panesar S, Wilson K et al (2011) Involving the patient to ask about hospital hand hygiene: a National Patient Safety Agency feasibility study. J Hosp Infect 77(4):299–303PubMedCrossRef
Zurück zum Zitat Raymond J, Aujard Y (2000) Nosocomial infections in pediatric patients a European, multicenter prospective study. Infect Control Hosp Epidemiol 21(04):260–263PubMedCrossRef Raymond J, Aujard Y (2000) Nosocomial infections in pediatric patients a European, multicenter prospective study. Infect Control Hosp Epidemiol 21(04):260–263PubMedCrossRef
Zurück zum Zitat Reichardt C, Eberlein-Gonska M, Schrappe M et al (2009) Clean hands campaign. No chance for hospital infections! Unfallchirurg 112(7):679–682PubMedCrossRef Reichardt C, Eberlein-Gonska M, Schrappe M et al (2009) Clean hands campaign. No chance for hospital infections! Unfallchirurg 112(7):679–682PubMedCrossRef
Zurück zum Zitat Reichardt C, Königer D, Bunte-Schönberger K et al (2013) Three years of national hand hygiene campaign in Germany: what are the key conclusions for clinical practice? J Hosp Infect 83:S11–SS6PubMedCrossRef Reichardt C, Königer D, Bunte-Schönberger K et al (2013) Three years of national hand hygiene campaign in Germany: what are the key conclusions for clinical practice? J Hosp Infect 83:S11–SS6PubMedCrossRef
Zurück zum Zitat Robert Koch Institut (RKI) (2016) Händehygiene in Einrichtungen des Gesundheitswesens Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) beim Robert Koch-Institut (RKI). Bundesgesundheitsblatt 59:1189–1220CrossRef Robert Koch Institut (RKI) (2016) Händehygiene in Einrichtungen des Gesundheitswesens Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) beim Robert Koch-Institut (RKI). Bundesgesundheitsblatt 59:1189–1220CrossRef
Zurück zum Zitat Robert Koch Institut (RKI) (2019) EUCAST-Neudefinition der Kategorie „I“ – zum Umgang hinsichtlich der Meldepflicht. Epidemiol Bull 9:84 Robert Koch Institut (RKI) (2019) EUCAST-Neudefinition der Kategorie „I“ – zum Umgang hinsichtlich der Meldepflicht. Epidemiol Bull 9:84
Zurück zum Zitat Sax H, Allegranzi B, Uckay I et al (2007) ‘My five moments for hand hygiene’: a user-centred design approach to understand, train, monitor and report hand hygiene. J Hosp Infect 67(1):9–21PubMedCrossRef Sax H, Allegranzi B, Uckay I et al (2007) ‘My five moments for hand hygiene’: a user-centred design approach to understand, train, monitor and report hand hygiene. J Hosp Infect 67(1):9–21PubMedCrossRef
Zurück zum Zitat Schmidt P, Hasan C, Simon A et al (2020) Multidrug-resistant bacteria in a paediatric palliative care inpatient unit: results of a one year surveillance. GMS Hyg Infect Control 15, doc3 Schmidt P, Hasan C, Simon A et al (2020) Multidrug-resistant bacteria in a paediatric palliative care inpatient unit: results of a one year surveillance. GMS Hyg Infect Control 15, doc3
Zurück zum Zitat Simon A, Müller A, Franz A et al (2009) Erfassung nosokomialer und Gesundheitssystem-assoziierter Infektionen in der Pädiatrie–Gemeinsame Stellungnahme zur Erfassung nosokomialer und gesundheitssystemassoziierter Infektionen in der Pädiatrie. Monatsschr Kinderheilk 157:166–172CrossRef Simon A, Müller A, Franz A et al (2009) Erfassung nosokomialer und Gesundheitssystem-assoziierter Infektionen in der Pädiatrie–Gemeinsame Stellungnahme zur Erfassung nosokomialer und gesundheitssystemassoziierter Infektionen in der Pädiatrie. Monatsschr Kinderheilk 157:166–172CrossRef
Zurück zum Zitat Simon A, Exner M, Engelhart S et al (2011) Umgang mit haMRSA kolonisierten Kindern und Jugendlichen im ambulanten Betreuungsumfeld. Hyg Med 36:30–35 Simon A, Exner M, Engelhart S et al (2011) Umgang mit haMRSA kolonisierten Kindern und Jugendlichen im ambulanten Betreuungsumfeld. Hyg Med 36:30–35
Zurück zum Zitat Urrea M, Pons M, Serra M et al (2003) Prospective incidence study of nosocomial infections in a pediatric intensive care unit. Pediatr Infect Dis J 22(6):490–493PubMedCrossRef Urrea M, Pons M, Serra M et al (2003) Prospective incidence study of nosocomial infections in a pediatric intensive care unit. Pediatr Infect Dis J 22(6):490–493PubMedCrossRef
Zurück zum Zitat Wissenschaftlicher Beirat der „Aktion saubere Hände“ (2011) Positionspapier zur Einreibemethode der Händedesinfektion. 30.09.2011 Wissenschaftlicher Beirat der „Aktion saubere Hände“ (2011) Positionspapier zur Einreibemethode der Händedesinfektion. 30.09.2011
Zurück zum Zitat Abad C, Fearday A, Safdar N (2010) Adverse effects of isolation in hospitalised patients: a systematic review. J Hosp Infect 76(2):97–102 Abad C, Fearday A, Safdar N (2010) Adverse effects of isolation in hospitalised patients: a systematic review. J Hosp Infect 76(2):97–102
Zurück zum Zitat Allegranzi B, Pittet D (2009) Role of hand hygiene in healthcare-associated infection prevention. J Hosp Infect 73(4):305–315 Allegranzi B, Pittet D (2009) Role of hand hygiene in healthcare-associated infection prevention. J Hosp Infect 73(4):305–315
Zurück zum Zitat Arbeitsgruppe der Deutschen Gesellschaft für Pädiatrische Infektiologie, Paed IC Projekt (2014) Infektionspräventives Vorgehen bei Nachweis von MRGN im Kindesalter. Hyg Med 39(10):392–399 Arbeitsgruppe der Deutschen Gesellschaft für Pädiatrische Infektiologie, Paed IC Projekt (2014) Infektionspräventives Vorgehen bei Nachweis von MRGN im Kindesalter. Hyg Med 39(10):392–399
Zurück zum Zitat Bundesministerium der Justiz und für Verbraucherschutz, Bundesamt für Justiz (2000) Gesetz zur Verhütung und Bekämpfung von Infektionskrankheiten beim Menschen (Infektionsschutzgesetz – IfSG). Bundesgesetzblatt 1, 1045. https://www.gesetze-im-internet.de/ifsg/. Zugegriffen am 21.03.2020 Bundesministerium der Justiz und für Verbraucherschutz, Bundesamt für Justiz (2000) Gesetz zur Verhütung und Bekämpfung von Infektionskrankheiten beim Menschen (Infektionsschutzgesetz – IfSG). Bundesgesetzblatt 1, 1045. https://​www.​gesetze-im-internet.​de/​ifsg/​. Zugegriffen am 21.03.2020
Zurück zum Zitat Chen Y-C, Lin C-F, Rehn Y-JF et al (2017) Reduced nosocomial infection rate in a neonatal intensive care unit during a 4-year surveillance period. J Chin Med Assoc 80(7):427–431 Chen Y-C, Lin C-F, Rehn Y-JF et al (2017) Reduced nosocomial infection rate in a neonatal intensive care unit during a 4-year surveillance period. J Chin Med Assoc 80(7):427–431
Zurück zum Zitat Dancer SJ (2010) Control of transmission of infection in hospitals requires more than clean hands. Infect Control Hosp Epidemiol 31(9):958–960 Dancer SJ (2010) Control of transmission of infection in hospitals requires more than clean hands. Infect Control Hosp Epidemiol 31(9):958–960
Zurück zum Zitat Dancer SJ (2009) The role of environmental cleaning in the control of hospital-acquired infection. J Hosp Infect 73(4):378–385 Dancer SJ (2009) The role of environmental cleaning in the control of hospital-acquired infection. J Hosp Infect 73(4):378–385
Zurück zum Zitat Day HR, Perencevich EN, Harris AD et al (2011) Do contact precautions cause depression? A two-year study at a tertiary care medical centre. J Hosp Infect 79(2):103–104 Day HR, Perencevich EN, Harris AD et al (2011) Do contact precautions cause depression? A two-year study at a tertiary care medical centre. J Hosp Infect 79(2):103–104
Zurück zum Zitat Donskey CJ (2004) The role of the intestinal tract as a reservoir and source for transmission of nosocomial pathogens. Clin Infect Dis 39(2):219 Donskey CJ (2004) The role of the intestinal tract as a reservoir and source for transmission of nosocomial pathogens. Clin Infect Dis 39(2):219
Zurück zum Zitat Erasmus V, Daha TJ, Brug H et al (2010) Systematic review of studies on compliance with hand hygiene guidelines in hospital care. Infect Control Hosp Epidemiol 31(3):283–294 Erasmus V, Daha TJ, Brug H et al (2010) Systematic review of studies on compliance with hand hygiene guidelines in hospital care. Infect Control Hosp Epidemiol 31(3):283–294
Zurück zum Zitat Giannini MA, Nance D, McCullers JA (2009) Are toilet seats a vector for transmission of methicillin-resistant Staphylococcus aureus? Am J Infect Control 37(6):505-6 Giannini MA, Nance D, McCullers JA (2009) Are toilet seats a vector for transmission of methicillin-resistant Staphylococcus aureus? Am J Infect Control 37(6):505-6
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) (2020) Surveillance von nosokomialen Infektionen. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2:228 Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) (2020) Surveillance von nosokomialen Infektionen. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2:228
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) beim Robert Koch-Institut (RKI) (2016) Händehygiene in Einrichtungen des Gesundheitswesens. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 9:1189 Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) beim Robert Koch-Institut (RKI) (2016) Händehygiene in Einrichtungen des Gesundheitswesens. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 9:1189
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2002) Ausbruchsmanagement und strukturiertes Vorgehen bei gehäuftem Auftreten nosokomialer Infektionen. Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert Koch-Institut. Bundesgesundheitsblatt 45:180-6 Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2002) Ausbruchsmanagement und strukturiertes Vorgehen bei gehäuftem Auftreten nosokomialer Infektionen. Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert Koch-Institut. Bundesgesundheitsblatt 45:180-6
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2011) Definition der Multiresistenz gegenüber Antibiotika bei gramnegativen Stäbchen im Hinblick auf Maßnahmen zur Vermeidung der Weiterverbreitung, Bd 36. Epidemiologisches Bulletin des Robert-Koch-Instituts, Berlin, S:337–339 Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2011) Definition der Multiresistenz gegenüber Antibiotika bei gramnegativen Stäbchen im Hinblick auf Maßnahmen zur Vermeidung der Weiterverbreitung, Bd 36. Epidemiologisches Bulletin des Robert-Koch-Instituts, Berlin, S:337–339
Zurück zum Zitat Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2009) Personelle und organisatorische Voraussetzungen zur Prävention nosokomialer Infektionen - Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention. Bundesgesundheitsbl 53:951-62 Kommission für Krankenhaushygiene und Infektionsprävention beim Robert Koch-Institut B (2009) Personelle und organisatorische Voraussetzungen zur Prävention nosokomialer Infektionen - Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention. Bundesgesundheitsbl 53:951-62
Zurück zum Zitat Kramer A, Christiansen B, Exner M et al (2000) Händehygiene. Mitteilung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert-Koch-Institut. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz 43:230-3 Kramer A, Christiansen B, Exner M et al (2000) Händehygiene. Mitteilung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert-Koch-Institut. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz 43:230-3
Zurück zum Zitat Kramer A, Schwebke I, Kampf G (2006) How long do nosocomial pathogens persist on inanimate surfaces? A systematic review. BMC Infect Dis 6(1):130 Kramer A, Schwebke I, Kampf G (2006) How long do nosocomial pathogens persist on inanimate surfaces? A systematic review. BMC Infect Dis 6(1):130
Zurück zum Zitat Lambe KA, Lydon S, Madden C et al (2019) Hand hygiene compliance in the ICU: a systematic review. Crit Care Med 47(9):1251–1257 Lambe KA, Lydon S, Madden C et al (2019) Hand hygiene compliance in the ICU: a systematic review. Crit Care Med 47(9):1251–1257
Zurück zum Zitat Lund-Nielsen B, Adamsen L, Gottrup F et al (2011) Qualitative bacteriology in malignant wounds – a prospective, randomized, clinical study to compare the effect of honey and silver dressings. Ostomy Wound Manage 57(7):28 Lund-Nielsen B, Adamsen L, Gottrup F et al (2011) Qualitative bacteriology in malignant wounds – a prospective, randomized, clinical study to compare the effect of honey and silver dressings. Ostomy Wound Manage 57(7):28
Zurück zum Zitat Mohr Edokpolo C (2011) Multiresistente Erreger in Langzeitpflegeeinrichtungen. Hyg Med 36(3):81 Mohr Edokpolo C (2011) Multiresistente Erreger in Langzeitpflegeeinrichtungen. Hyg Med 36(3):81
Zurück zum Zitat Pittet D, Panesar S, Wilson K et al (2011) Involving the patient to ask about hospital hand hygiene: a National Patient Safety Agency feasibility study. J Hosp Infect 77(4):299–303 Pittet D, Panesar S, Wilson K et al (2011) Involving the patient to ask about hospital hand hygiene: a National Patient Safety Agency feasibility study. J Hosp Infect 77(4):299–303
Zurück zum Zitat Raymond J, Aujard Y (2000) Nosocomial infections in pediatric patients a European, multicenter prospective study. Infect Control Hosp Epidemiol 21(04):260–263 Raymond J, Aujard Y (2000) Nosocomial infections in pediatric patients a European, multicenter prospective study. Infect Control Hosp Epidemiol 21(04):260–263
Zurück zum Zitat Reichardt C, Eberlein-Gonska M, Schrappe M et al (2009) Clean hands campaign. No chance for hospital infections! Unfallchirurg 112(7):679–682 Reichardt C, Eberlein-Gonska M, Schrappe M et al (2009) Clean hands campaign. No chance for hospital infections! Unfallchirurg 112(7):679–682
Zurück zum Zitat Reichardt C, Königer D, Bunte-Schönberger K et al (2013) Three years of national hand hygiene campaign in Germany: what are the key conclusions for clinical practice? J Hosp Infect 83:S11–S6 Reichardt C, Königer D, Bunte-Schönberger K et al (2013) Three years of national hand hygiene campaign in Germany: what are the key conclusions for clinical practice? J Hosp Infect 83:S11–S6
Zurück zum Zitat Robert Koch Institut (RKI) (2019) EUCAST-Neudefinition der Kategorie „I“ – zum Umgang hinsichtlich der Meldepflicht. Epidemiol Bull 9:84 Robert Koch Institut (RKI) (2019) EUCAST-Neudefinition der Kategorie „I“ – zum Umgang hinsichtlich der Meldepflicht. Epidemiol Bull 9:84
Zurück zum Zitat Robert Koch Institut (RKI) (2016) Händehygiene in Einrichtungen des Gesundheitswesens Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) beim Robert Koch-Institut (RKI). Bundesgesundheitsblatt 59:1189–1220 Robert Koch Institut (RKI) (2016) Händehygiene in Einrichtungen des Gesundheitswesens Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention (KRINKO) beim Robert Koch-Institut (RKI). Bundesgesundheitsblatt 59:1189–1220
Zurück zum Zitat Sax H, Allegranzi B, Uckay I et al (2007) ‘My five moments for hand hygiene’: a user-centred design approach to understand, train, monitor and report hand hygiene. J Hosp Infect 67(1):9–21 Sax H, Allegranzi B, Uckay I et al (2007) ‘My five moments for hand hygiene’: a user-centred design approach to understand, train, monitor and report hand hygiene. J Hosp Infect 67(1):9–21
Zurück zum Zitat Schmidt P, Hasan C, Simon A et al (2020) Multidrug-resistant bacteria in a paediatric palliative care inpatient unit: results of a one year surveillance. GMS Hyg Infect Control 15 Schmidt P, Hasan C, Simon A et al (2020) Multidrug-resistant bacteria in a paediatric palliative care inpatient unit: results of a one year surveillance. GMS Hyg Infect Control 15
Zurück zum Zitat Simon A, Exner M, Engelhart S et al (2011) Umgang mit haMRSA kolonisierten Kindern und Jugendlichen im ambulanten Betreuungsumfeld. Hyg Med 36:30–35 Simon A, Exner M, Engelhart S et al (2011) Umgang mit haMRSA kolonisierten Kindern und Jugendlichen im ambulanten Betreuungsumfeld. Hyg Med 36:30–35
Zurück zum Zitat Simon A, Müller A, Franz A et al. (2009) Erfassung nosokomialer und Gesundheitssystem-assoziierter Infektionen in der Pädiatrie–Gemeinsame Stellungnahme zur Erfassung nosokomialer und gesundheitssystemassoziierter Infektionen in der Pädiatrie. Monatsschr Kinderheilk 157:166–172 Simon A, Müller A, Franz A et al. (2009) Erfassung nosokomialer und Gesundheitssystem-assoziierter Infektionen in der Pädiatrie–Gemeinsame Stellungnahme zur Erfassung nosokomialer und gesundheitssystemassoziierter Infektionen in der Pädiatrie. Monatsschr Kinderheilk 157:166–172
Zurück zum Zitat Urrea M, Pons M, Serra M et al. (2003) Prospective incidence study of nosocomial infections in a pediatric intensive care unit. Pediatr Infect Dis J 22(6):490-3 Urrea M, Pons M, Serra M et al. (2003) Prospective incidence study of nosocomial infections in a pediatric intensive care unit. Pediatr Infect Dis J 22(6):490-3
Zurück zum Zitat Wissenschaftlicher Beirat der „Aktion saubere Hände“ (2011) Positionspapier zur Einreibemethode der Händedesinfektion. 30.09.2011 Wissenschaftlicher Beirat der „Aktion saubere Hände“ (2011) Positionspapier zur Einreibemethode der Händedesinfektion. 30.09.2011
Zurück zum Zitat Adams D, Karpanen T, Worthington T et al (2006) Infection risk associated with a closed luer access device. J Hosp Infect 62(3):353–357PubMedCrossRef Adams D, Karpanen T, Worthington T et al (2006) Infection risk associated with a closed luer access device. J Hosp Infect 62(3):353–357PubMedCrossRef
Zurück zum Zitat Anderson DM, Pesaturo KA, Casavant J et al (2013) Alteplase for the treatment of catheter occlusion in pediatric patients. Ann Pharmacother 47(3):405–409PubMedCrossRef Anderson DM, Pesaturo KA, Casavant J et al (2013) Alteplase for the treatment of catheter occlusion in pediatric patients. Ann Pharmacother 47(3):405–409PubMedCrossRef
Zurück zum Zitat Arbeitsgruppe KRINKO-BfArM-RKI (2016) Bericht der Arbeitsgruppe KRINKO-BfArM-RKI: Zu spezifischen Fragen bezüglich Rekonstitution, Zubereitung und Applikation von Arzneimitteln und Infusionslösungen sowie zur Hautantiseptik. Epidemiol Bulletin des Robert Koch-Instituts, Berlin 20:173–178 Arbeitsgruppe KRINKO-BfArM-RKI (2016) Bericht der Arbeitsgruppe KRINKO-BfArM-RKI: Zu spezifischen Fragen bezüglich Rekonstitution, Zubereitung und Applikation von Arzneimitteln und Infusionslösungen sowie zur Hautantiseptik. Epidemiol Bulletin des Robert Koch-Instituts, Berlin 20:173–178
Zurück zum Zitat Austin PD, Elia M (2009) A systematic review and meta-analysis of the risk of microbial contamination of aseptically prepared doses in different environments. J Pharm Pharm Sci 12(2):233–242PubMedCrossRef Austin PD, Elia M (2009) A systematic review and meta-analysis of the risk of microbial contamination of aseptically prepared doses in different environments. J Pharm Pharm Sci 12(2):233–242PubMedCrossRef
Zurück zum Zitat Bertoglio S, Rezzo R, Merlo FD et al (2013) Pre-filled normal saline syringes to reduce totally implantable venous access device-associated bloodstream infection: a single institution pilot study. J Hosp Infect 84(1):85–88PubMedCrossRef Bertoglio S, Rezzo R, Merlo FD et al (2013) Pre-filled normal saline syringes to reduce totally implantable venous access device-associated bloodstream infection: a single institution pilot study. J Hosp Infect 84(1):85–88PubMedCrossRef
Zurück zum Zitat Bisseling TM, Willems MC, Versleijen MW et al (2010) Taurolidine lock is highly effective in preventing catheter-related bloodstream infections in patients on home parenteral nutrition: a heparin-controlled prospective trial. Clin Nutr 29(4):464–468PubMedCrossRef Bisseling TM, Willems MC, Versleijen MW et al (2010) Taurolidine lock is highly effective in preventing catheter-related bloodstream infections in patients on home parenteral nutrition: a heparin-controlled prospective trial. Clin Nutr 29(4):464–468PubMedCrossRef
Zurück zum Zitat Blaney M, Shen V, Kerner JA et al (2006) Alteplase for the treatment of central venous catheter occlusion in children: results of a prospective, open-label, single-arm study (The Cathflo Activase Pediatric Study). J Vasc Interv Radiol 17(11 Pt 1):1745–1751PubMedCrossRef Blaney M, Shen V, Kerner JA et al (2006) Alteplase for the treatment of central venous catheter occlusion in children: results of a prospective, open-label, single-arm study (The Cathflo Activase Pediatric Study). J Vasc Interv Radiol 17(11 Pt 1):1745–1751PubMedCrossRef
Zurück zum Zitat Bradshaw JH, Puntis JW (2008) Taurolidine and catheter-related bloodstream infection: a systematic review of the literature. J Pediatr Gastroenterol Nutr 47(2):179–186PubMedCrossRef Bradshaw JH, Puntis JW (2008) Taurolidine and catheter-related bloodstream infection: a systematic review of the literature. J Pediatr Gastroenterol Nutr 47(2):179–186PubMedCrossRef
Zurück zum Zitat Chesshyre E, Goff Z, Bowen A et al (2015) The prevention, diagnosis and management of central venous line infections in children. J Infect 71(Suppl 1):S59–S75PubMedCrossRef Chesshyre E, Goff Z, Bowen A et al (2015) The prevention, diagnosis and management of central venous line infections in children. J Infect 71(Suppl 1):S59–S75PubMedCrossRef
Zurück zum Zitat Chu HP, Brind J, Tomar R et al (2012) Significant reduction in central venous catheter-related bloodstream infections in children on HPN after starting treatment with taurolidine line lock. J Pediatr Gastroenterol Nutr 55(4):403–407PubMedCrossRef Chu HP, Brind J, Tomar R et al (2012) Significant reduction in central venous catheter-related bloodstream infections in children on HPN after starting treatment with taurolidine line lock. J Pediatr Gastroenterol Nutr 55(4):403–407PubMedCrossRef
Zurück zum Zitat Cullis PS, McKee RF (2011) Taurolidine lock - experience from the West of Scotland. Clin Nutr 30(3):399–400PubMedCrossRef Cullis PS, McKee RF (2011) Taurolidine lock - experience from the West of Scotland. Clin Nutr 30(3):399–400PubMedCrossRef
Zurück zum Zitat Ellger B, Kiski D, Diem E et al (2011) Non-return valves do not prevent backflow and bacterial contamination of intravenous infusions. J Hosp Infect 78(1):31–35PubMedCrossRef Ellger B, Kiski D, Diem E et al (2011) Non-return valves do not prevent backflow and bacterial contamination of intravenous infusions. J Hosp Infect 78(1):31–35PubMedCrossRef
Zurück zum Zitat Engelhart S, Exner M, Simon A (2015) In vitro study on the disinfectability of two split-septum needle-free connection devices using different disinfection procedures. GMS Hyg Infect Control 10:Doc17PubMedPubMedCentral Engelhart S, Exner M, Simon A (2015) In vitro study on the disinfectability of two split-septum needle-free connection devices using different disinfection procedures. GMS Hyg Infect Control 10:Doc17PubMedPubMedCentral
Zurück zum Zitat Holroyd JL, Paulus DA, Rand KH et al (2014) Universal intravenous access cleaning device fails to sterilize stopcocks. Anesth Analg 118(2):333–343PubMedCrossRef Holroyd JL, Paulus DA, Rand KH et al (2014) Universal intravenous access cleaning device fails to sterilize stopcocks. Anesth Analg 118(2):333–343PubMedCrossRef
Zurück zum Zitat Hubner NO, Siebert J, Kramer A (2010) Octenidine dihydrochloride, a modern antiseptic for skin, mucous membranes and wounds. Skin Pharmacol Physiol 23(5):244–258PubMedCrossRef Hubner NO, Siebert J, Kramer A (2010) Octenidine dihydrochloride, a modern antiseptic for skin, mucous membranes and wounds. Skin Pharmacol Physiol 23(5):244–258PubMedCrossRef
Zurück zum Zitat Jack T, Brent BE, Boehne M et al (2010) Analysis of particulate contaminations of infusion solutions in a pediatric intensive care unit. Intensive Care Med 36(4):707–711PubMedPubMedCentralCrossRef Jack T, Brent BE, Boehne M et al (2010) Analysis of particulate contaminations of infusion solutions in a pediatric intensive care unit. Intensive Care Med 36(4):707–711PubMedPubMedCentralCrossRef
Zurück zum Zitat Jack T, Boehne M, Brent BE et al (2012) In-line filtration reduces severe complications and length of stay on pediatric intensive care unit: a prospective, randomized, controlled trial. Intensive Care Med 38(6):1008–1016PubMedPubMedCentralCrossRef Jack T, Boehne M, Brent BE et al (2012) In-line filtration reduces severe complications and length of stay on pediatric intensive care unit: a prospective, randomized, controlled trial. Intensive Care Med 38(6):1008–1016PubMedPubMedCentralCrossRef
Zurück zum Zitat Jurewitsch B, Jeejeebhoy KN (2005) Taurolidine lock: the key to prevention of recurrent catheter-related bloodstream infections. Clin Nutr 24(3):462–465PubMedCrossRef Jurewitsch B, Jeejeebhoy KN (2005) Taurolidine lock: the key to prevention of recurrent catheter-related bloodstream infections. Clin Nutr 24(3):462–465PubMedCrossRef
Zurück zum Zitat Jurewitsch B, Lee T, Park J et al (1998) Taurolidine 2 % as an antimicrobial lock solution for prevention of recurrent catheter-related bloodstream infections. JPEN J Parenter Enteral Nutr 22(4):242–244 Jurewitsch B, Lee T, Park J et al (1998) Taurolidine 2 % as an antimicrobial lock solution for prevention of recurrent catheter-related bloodstream infections. JPEN J Parenter Enteral Nutr 22(4):242–244
Zurück zum Zitat Liu H, Liu H, Deng J et al (2014) Preventing catheter-related bacteremia with taurolidine-citrate catheter locks: a systematic review and meta-analysis. Blood Purif 37(3):179–187PubMedCrossRef Liu H, Liu H, Deng J et al (2014) Preventing catheter-related bacteremia with taurolidine-citrate catheter locks: a systematic review and meta-analysis. Blood Purif 37(3):179–187PubMedCrossRef
Zurück zum Zitat Lopez-Briz E, Ruiz-Garcia V (2005) Effectiveness of heparin versus NaCl 0,9 % in central venous catheter flushing. A systematic review. Farm Hosp 29(4):258–264 Lopez-Briz E, Ruiz-Garcia V (2005) Effectiveness of heparin versus NaCl 0,9 % in central venous catheter flushing. A systematic review. Farm Hosp 29(4):258–264
Zurück zum Zitat Maragakis LL, Bradley KL, Song X et al (2006) Increased catheter-related bloodstream infection rates after the introduction of a new mechanical valve intravenous access port. Infect Control Hosp Epidemiol 27(1):67–70PubMedCrossRef Maragakis LL, Bradley KL, Song X et al (2006) Increased catheter-related bloodstream infection rates after the introduction of a new mechanical valve intravenous access port. Infect Control Hosp Epidemiol 27(1):67–70PubMedCrossRef
Zurück zum Zitat Marschall J, Mermel LA, Fakih M et al (2014) Strategies to prevent central line-associated bloodstream infections in acute care hospitals: 2014 update. Infect Control Hosp Epidemiol 35(7):753–771PubMedCrossRef Marschall J, Mermel LA, Fakih M et al (2014) Strategies to prevent central line-associated bloodstream infections in acute care hospitals: 2014 update. Infect Control Hosp Epidemiol 35(7):753–771PubMedCrossRef
Zurück zum Zitat Pohl F, Hartmann W, Holzmann T et al (2014) Risk of infection due to medical interventions via central venous catheters or implantable venous access port systems at the middle port of a three-way cock: luer lock cap vs. luer access split septum system (Q-Syte). BMC Infect Dis 14:41PubMedPubMedCentralCrossRef Pohl F, Hartmann W, Holzmann T et al (2014) Risk of infection due to medical interventions via central venous catheters or implantable venous access port systems at the middle port of a three-way cock: luer lock cap vs. luer access split septum system (Q-Syte). BMC Infect Dis 14:41PubMedPubMedCentralCrossRef
Zurück zum Zitat Schlicht A, Fleischhack G, Herdeis C et al (2009) In vitro investigation of the exposure time necessary to yield a 5 log reduction of clinicall relevant bacteria by a taurolidine containing antimicrobial catheter lock solution. Hyg Med 34(9):343–345 Schlicht A, Fleischhack G, Herdeis C et al (2009) In vitro investigation of the exposure time necessary to yield a 5 log reduction of clinicall relevant bacteria by a taurolidine containing antimicrobial catheter lock solution. Hyg Med 34(9):343–345
Zurück zum Zitat Shah CB, Mittelman MW, Costerton JW et al (2002) Antimicrobial activity of a novel catheter lock solution. Antimicrob Agents Chemother 46(6):1674–1679PubMedPubMedCentralCrossRef Shah CB, Mittelman MW, Costerton JW et al (2002) Antimicrobial activity of a novel catheter lock solution. Antimicrob Agents Chemother 46(6):1674–1679PubMedPubMedCentralCrossRef
Zurück zum Zitat Shen V, Li X, Murdock M et al (2003) Recombinant tissue plasminogen activator (alteplase) for restoration of function to occluded central venous catheters in pediatric patients. J Pediatr Hematol Oncol 25(1):38–45PubMedCrossRef Shen V, Li X, Murdock M et al (2003) Recombinant tissue plasminogen activator (alteplase) for restoration of function to occluded central venous catheters in pediatric patients. J Pediatr Hematol Oncol 25(1):38–45PubMedCrossRef
Zurück zum Zitat Simon A, Furtwängler R, Laws HJ et al (2017) Evidenz-basierte Empfehlungen zur Anwendung dauerhaft implantierter, zentralvenöser Zugänge in der pädiatrischen Onkologie. mhp-Verlag GmbH, Wiesbaden Simon A, Furtwängler R, Laws HJ et al (2017) Evidenz-basierte Empfehlungen zur Anwendung dauerhaft implantierter, zentralvenöser Zugänge in der pädiatrischen Onkologie. mhp-Verlag GmbH, Wiesbaden
Zurück zum Zitat Smith JS, Kirksey KM, Becker H et al (2011) Autonomy and self-efficacy as influencing factors in nurses’ behavioral intention to disinfect needleless intravenous systems. J Infus Nurs 34(3):193–200PubMedCrossRef Smith JS, Kirksey KM, Becker H et al (2011) Autonomy and self-efficacy as influencing factors in nurses’ behavioral intention to disinfect needleless intravenous systems. J Infus Nurs 34(3):193–200PubMedCrossRef
Zurück zum Zitat Stucki C, Sautter AM, Favet J et al (2009) Microbial contamination of syringes during preparation: the direct influence of environmental cleanliness and risk manipulations on end-product quality. Am J Health Syst Pharm 66(22):2032–2036PubMedCrossRef Stucki C, Sautter AM, Favet J et al (2009) Microbial contamination of syringes during preparation: the direct influence of environmental cleanliness and risk manipulations on end-product quality. Am J Health Syst Pharm 66(22):2032–2036PubMedCrossRef
Zurück zum Zitat Tan M, Lau J, Guglielmo BJ (2014) Ethanol locks in the prevention and treatment of catheter-related bloodstream infections. Ann Pharmacother 48(5):607–615PubMedCrossRef Tan M, Lau J, Guglielmo BJ (2014) Ethanol locks in the prevention and treatment of catheter-related bloodstream infections. Ann Pharmacother 48(5):607–615PubMedCrossRef
Zurück zum Zitat Tietz A, Frei R, Dangel M et al (2005) Octenidine hydrochloride for the care of central venous catheter insertion sites in severely immunocompromised patients. Infect Control Hosp Epidemiol 26(8):703–707PubMedCrossRef Tietz A, Frei R, Dangel M et al (2005) Octenidine hydrochloride for the care of central venous catheter insertion sites in severely immunocompromised patients. Infect Control Hosp Epidemiol 26(8):703–707PubMedCrossRef
Zurück zum Zitat Toure A, Lauverjat M, Peraldi C et al (2012) Taurolidine lock solution in the secondary prevention of central venous catheter-associated bloodstream infection in home parenteral nutrition patients. Clin Nutr 31(4):567–570PubMedCrossRef Toure A, Lauverjat M, Peraldi C et al (2012) Taurolidine lock solution in the secondary prevention of central venous catheter-associated bloodstream infection in home parenteral nutrition patients. Clin Nutr 31(4):567–570PubMedCrossRef
Zurück zum Zitat Traub WH, Leonhard B, Bauer D (1993) Taurolidine: in vitro activity against multiple-antibiotic-resistant, nosocomially significant clinical isolates of Staphylococcus aureus, Enterococcus faecium, and diverse Enterobacteriaceae. Chemotherapy 39(5):322–330PubMedCrossRef Traub WH, Leonhard B, Bauer D (1993) Taurolidine: in vitro activity against multiple-antibiotic-resistant, nosocomially significant clinical isolates of Staphylococcus aureus, Enterococcus faecium, and diverse Enterobacteriaceae. Chemotherapy 39(5):322–330PubMedCrossRef
Zurück zum Zitat Trautmann M, Kreutzberger M, Bobic R et al (2012) Disinfection of a needleless connector with alcohol-based disinfectant wipes – an experimental study. Hyg Med 37(9):354–359 Trautmann M, Kreutzberger M, Bobic R et al (2012) Disinfection of a needleless connector with alcohol-based disinfectant wipes – an experimental study. Hyg Med 37(9):354–359
Zurück zum Zitat Vonberg RP, Gastmeier P (2007) Hospital-acquired infections related to contaminated substances. J Hosp Infect 65(1):15–23PubMedCrossRef Vonberg RP, Gastmeier P (2007) Hospital-acquired infections related to contaminated substances. J Hosp Infect 65(1):15–23PubMedCrossRef
Zurück zum Zitat Wanten GJA, Bisseling TM (2011) Responding letter to editor - Taurolidine lock is highly effective in preventing catheter-related bloodstream infections in patients on home parenteral nutrition: a heparin-controlled prospective trial. Clin Nutr 30(3):401 Wanten GJA, Bisseling TM (2011) Responding letter to editor - Taurolidine lock is highly effective in preventing catheter-related bloodstream infections in patients on home parenteral nutrition: a heparin-controlled prospective trial. Clin Nutr 30(3):401
Zurück zum Zitat Wolf J, Shenep JL, Clifford V et al (2013) Ethanol lock therapy in pediatric hematology and oncology. Pediatr Blood Cancer 60(1):18–25PubMedCrossRef Wolf J, Shenep JL, Clifford V et al (2013) Ethanol lock therapy in pediatric hematology and oncology. Pediatr Blood Cancer 60(1):18–25PubMedCrossRef
Zurück zum Zitat Zacharioudakis IM, Zervou FN, Arvanitis M et al (2014) Antimicrobial lock solutions as a method to prevent central line-associated bloodstream infections: a meta-analysis of randomized controlled trials. Clin Infect Dis 59(12):1741–1749PubMedCrossRef Zacharioudakis IM, Zervou FN, Arvanitis M et al (2014) Antimicrobial lock solutions as a method to prevent central line-associated bloodstream infections: a meta-analysis of randomized controlled trials. Clin Infect Dis 59(12):1741–1749PubMedCrossRef
Zurück zum Zitat Association for Children with Life-threatening or Terminal Conditions and their Families (ACT), National Council for Hospice and Specialist Palliative Care Services (NCHSPCS), Scottish Partnership Agency for Palliative and Cancer Care (SPAPCC) (2001) Palliative care for young people aged 13-24. ACT, NCHSPCS, SPAPCC Bristol, London, Edinburgh UK Association for Children with Life-threatening or Terminal Conditions and their Families (ACT), National Council for Hospice and Specialist Palliative Care Services (NCHSPCS), Scottish Partnership Agency for Palliative and Cancer Care (SPAPCC) (2001) Palliative care for young people aged 13-24. ACT, NCHSPCS, SPAPCC Bristol, London, Edinburgh UK
Zurück zum Zitat Cooley W, Sagerman P, Pediatrics AAo et al (2011) Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128(1):182 Cooley W, Sagerman P, Pediatrics AAo et al (2011) Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128(1):182
Zurück zum Zitat Dobbels F, Ruppar T, De Geest S et al (2010) Adherence to the immunosuppressive regimen in pediatric kidney transplant recipients: a systematic review. Pediatr Transplant 14(5):603–613PubMedCrossRef Dobbels F, Ruppar T, De Geest S et al (2010) Adherence to the immunosuppressive regimen in pediatric kidney transplant recipients: a systematic review. Pediatr Transplant 14(5):603–613PubMedCrossRef
Zurück zum Zitat Doug M, Adi Y, Williams J et al (2009) Transition to adult services for children and young people with palliative care needs: a systematic review. Arch Dis Child 96(1):78–84PubMedCrossRef Doug M, Adi Y, Williams J et al (2009) Transition to adult services for children and young people with palliative care needs: a systematic review. Arch Dis Child 96(1):78–84PubMedCrossRef
Zurück zum Zitat Fraser LK, Childs AM, Miller M et al (2012a) A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care. Palliat Med 26(7):924–929PubMedCrossRef Fraser LK, Childs AM, Miller M et al (2012a) A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care. Palliat Med 26(7):924–929PubMedCrossRef
Zurück zum Zitat Fraser LK, Miller M, Hain R et al (2012b) Rising national prevalence of life-limiting conditions in children in england. Pediatrics 129(4):e923–e9e9PubMedCrossRef Fraser LK, Miller M, Hain R et al (2012b) Rising national prevalence of life-limiting conditions in children in england. Pediatrics 129(4):e923–e9e9PubMedCrossRef
Zurück zum Zitat Fraser LK, Lidstone V, Miller M et al (2014) Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset. Palliat Med 28(6):513–520PubMedCrossRef Fraser LK, Lidstone V, Miller M et al (2014) Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset. Palliat Med 28(6):513–520PubMedCrossRef
Zurück zum Zitat Kirk S, Fraser C (2014) Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: A qualitative study. Palliat Med 28(4):342–352PubMedCrossRef Kirk S, Fraser C (2014) Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: A qualitative study. Palliat Med 28(4):342–352PubMedCrossRef
Zurück zum Zitat Linebarger JS, Ajayi TA, Jones BL (2014) Adolescents and young adults with life-threatening illness: special considerations, transitions in care, and the role of pediatric palliative care. Pediatr Clin N Am 61(4):785–796CrossRef Linebarger JS, Ajayi TA, Jones BL (2014) Adolescents and young adults with life-threatening illness: special considerations, transitions in care, and the role of pediatric palliative care. Pediatr Clin N Am 61(4):785–796CrossRef
Zurück zum Zitat von Moers A, Müther S, Findorff J (2018) Transition als dringliche und gemeinsame Aufgabe. Monatsschr Kinderheilk 166(8):733–743CrossRef von Moers A, Müther S, Findorff J (2018) Transition als dringliche und gemeinsame Aufgabe. Monatsschr Kinderheilk 166(8):733–743CrossRef
Zurück zum Zitat Reinhardt D, Götz M, Kraemer R et al (Hrsg) (2001) Cystische Fibrose. Springer, Berlin/Heidelberg Reinhardt D, Götz M, Kraemer R et al (Hrsg) (2001) Cystische Fibrose. Springer, Berlin/Heidelberg
Zurück zum Zitat Seidel M, Kappe C, Stockmann J et al (2020) MZEB: Ein wichtiges Angebot kommt nicht voran Medizinische Behandlungszentren für Erwachsene mit geistiger oder schwerer Mehrfachbehinderung. Westfälisches Ärzteblatt 05(20):24–26 Seidel M, Kappe C, Stockmann J et al (2020) MZEB: Ein wichtiges Angebot kommt nicht voran Medizinische Behandlungszentren für Erwachsene mit geistiger oder schwerer Mehrfachbehinderung. Westfälisches Ärzteblatt 05(20):24–26
Zurück zum Zitat Ullrich G (2014) Transition. Mehr als ein „Transfer“. Dtsch Arztebl 111(37):A-1508/B-301/C-237 Ullrich G (2014) Transition. Mehr als ein „Transfer“. Dtsch Arztebl 111(37):A-1508/B-301/C-237
Zurück zum Zitat Van Walleghem N, MacDonald CA, Dean HJ (2011) The Maestro Project: a patient navigator for the transition of care for youth with type 1 diabetes. Diabetes Spectr 24(1):9–13CrossRef Van Walleghem N, MacDonald CA, Dean HJ (2011) The Maestro Project: a patient navigator for the transition of care for youth with type 1 diabetes. Diabetes Spectr 24(1):9–13CrossRef
Zurück zum Zitat Watson AR (2000) Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol 14(6):469–472PubMedCrossRef Watson AR (2000) Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol 14(6):469–472PubMedCrossRef
Metadaten
Titel
Besondere Patientengruppen und praktische Herausforderungen
verfasst von
Georg Rellensmann
Ingeborg van den Heuvel
Kerstin von der Hude
Lars Garten
Silke Nolte-Buchholtz
Boris Zernikow
Mandira Reuther
Jens Berrang
Thomas Berger
Carola Hasan
Michael C. Frühwald
Tim Niehues
Ulrich Neudorf
Anne Schönecker
Uta Schürmann
Uwe Mellies
Heike Bredow
Caroline Gauch-Ayar
Michael Frosch
Bettina Hübner-Möhler
Andrea Beissenhirtz
Almut Hartenstein-Pinter
Hauke Schumann
Arne Simon
Pia Schmidt
Anna Kämper
Birgit Mertens
Barbara Gertz
Copyright-Jahr
2021
Verlag
Springer Berlin Heidelberg
DOI
https://doi.org/10.1007/978-3-662-61777-9_6

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