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Besonderheiten der pädiatrischen Palliativversorgung bei besonderen Patientengruppen

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Palliativversorgung von Kindern, Jugendlichen und jungen Erwachsenen

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Zusammenfassung

In der Prä- und Perinatalmedizin gibt es vielgestaltige Angebote, um Familien gerecht zu werden, deren ungeborenes Kind an einer schweren, lebensbegrenzenden Erkrankung leidet. Dies jedoch als palliativmedizinische Versorgung zu begreifen und die Strukturen und Erfahrungen aus anderen Bereichen der Palliativmedizin fruchtbar zu machen, ist eine junge Entwicklung. (Kilby et al. 2011; Murdoch 2010).

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Literatur

Zu Abschn. 7.1

  • Anderson G (1999) Nondirectiveness in prenatal genetics: patients read between the lines. Nurs Ethics 6:126–36

    CAS  Google Scholar 

  • Breeze ACG, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM (2007) Palliative care for prenatally diagnosed lethal fetal abnormality. Arch Dis Childh Fetal Neonat 92:F56- F58

    CAS  Google Scholar 

  • Dahl K, Kesmodel U, Hvidman L, Olesen F (2006) Informed consent: providing information about prenatal examina- tions. Acta Obstet Gynecol Scand 85:1420–5

    PubMed  Google Scholar 

  • Davies R (2004) New understandings of parental grief: Litera- ture review. J Adv Nurs 46:506–13

    Google Scholar 

  • Davies R (2005) Mothers’ stories of loss: their need to be with their dying child and their child’s body after death. J Child Health Care 9:288–300

    PubMed  Google Scholar 

  • Decrespigny L (2003) Words matter: nomenclature and com- munication in perinatal medicine. Clin Perinatol 30:17–25

    Google Scholar 

  • Derbyshire SWG (2010) Foetal pain? Best practice & Research. Clin Gynaecol 24:647–655

    Google Scholar 

  • Dörries A, Neitzke G, Simon A, Vollmann J (2008) Klinische Ethikberatung: Ein Praxisbuch. Kohlhammer, Stuttgart

    Google Scholar 

  • Freud S (1981) Trauer und Melancholie. Fischer, Stuttgart

    Google Scholar 

  • Gigerenzer G (2004) Das Einmaleins der Skepsis: Über den richtigen Umgang mit Zahlen und Risiken. Berliner Taschenbuch Verlag, Berlin

    Google Scholar 

  • Hughes P, Turton P, Hopper E, Evans CDH (2002) Assessment of guidelines for good practice in psychosocial care of mothers after stillbirth: a cohort study. Lancet 360:114–8

    CAS  Google Scholar 

  • Hunt LM, de Voogd KB, Castaneda H (2005) The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making? Patient Educ Couns 56:302–12

    PubMed  Google Scholar 

  • Kilby MD, Pretlove SJ, Bedford Russell AR (2011) Multidiscipli- nary palliative care in unborn and newborn babies. BMJ 342

    Google Scholar 

  • Lalor JG, Devane D, Begley CM (2007) Unexpected diagnosis of fetal abnormality: women’s encounters with care- givers. Birth 34:80–8

    Google Scholar 

  • Lee SJ, Ralston HJP, Drey EA, Partridge JC, Rosen MA (2005b) Fetal pain. JAMA: The Journal of the American Medical Association 294:947–54

    CAS  Google Scholar 

  • Lloyd J, Laurence KM (1985) Sequelae and support after ter- mination of pregnancy for fetal malformation. Br Med J (Clin Res Ed) 290:907–9

    CAS  Google Scholar 

  • Murdoch EM (2010) Palliative care (supportive and end of life care). A framework for clinical practice in Perinatal medi- cine. http://www.bapm org/publications/documents/guidelines/Palliative_Care_Report_final_%20Aug10.pdf. Abgerufen 30.06.2012

  • National Collaborating Centre for Mental Health at the Royal College of Psychiatrists (2011) Induced abortion and mental health: a systematic review of the mental health outcomes of induced abortion, including their preva- lence and associated factors. Royal College of Psychia- trists, London

    Google Scholar 

  • Pope R, Graham L, Patel S (2001) Woman-centred care. Int J Nurs Stud 38:227–38

    PubMed  CAS  Google Scholar 

  • Rellensmann G, Hasan C (2009) Empfehlungen zum Vorgehen in Notfallsituationen. Monatsschr Kinderheilkd 157:38–42

    Google Scholar 

  • Rempel GR, Cender LM, Lynam MJ, Sandor GG, Farquharson D (2004) Parents’ perspectives on decision making after antenatal diagnosis of congenital heart disease. J Obstet Gynecol Neonat Nurs 33:64–70

    Google Scholar 

  • Saigal S, Tyson J (2008) Measurement of quality of life of sur- vivors of neonatal intensive care: critique and implica- tions. Elsevier, London New York San Diego ; pp 59–66

    Google Scholar 

  • Scheidt CE (2007) Trauerverarbeitung nach Prä- und Perinatal- verlust. Prävalenz, klinisches Bild und Behandlung - eine Übersicht über den aktuellen Forschungsstand. Psycho- ther Psychosoma Med Psychol 57:4–11

    Google Scholar 

  • Steinberg JR (2012) Fatal flaws in a recent meta-analysis on abortion and mental health. Contraception. http://www.ncbi.nlm.nih.gov/pubmed/22579105. Abgerufen 02.07.2012

  • Templeton A, Grimes DA (2011) A Request for Abortion. N Engl J Med 365:2198–204

    PubMed  Google Scholar 

  • Wewetzer C (2009) Spätabbruch und Fetozid. Hessisches Ärzteblatt 6:359–402

    Google Scholar 

  • Wiesemann C (2006) Von der Verantwortung, ein Kind zu be-kommen: Eine Ethik der Schwangerschaft. Beck, München

    Google Scholar 

Zu Abschn. 7.2

  • Akademie für Ethik in der Medizin, Deutsche Gesellschaft für Kinderheilkunde, Deutsche Gesellschaft für Medizinrecht (1992) Grenzen ärztlicher Behandlungspflicht bei schwerst geschädigten Neugeborenen. Einbecker Emp¬fehlung, Revidierte Fassung 1992. Ethik Med 4:103-104 , Medizinrecht 10:206–207

    Google Scholar 

  • American Academy of Pediatrics (2000) Special consider- ations. In: Brander D, Kattwinkel J, Denson S, Zaichkin J (eds) Textbook of neonatal resuscitation, 4th ed. American Academy of Pediatrics/American Heart Association, Elk Grove Village, IL; pp 7–19

    Google Scholar 

  • Ancel PY, Livinec F, Larroque B et al., the EPIPAGE study group (2006) Cerebral palsy among very preterm children in relation to gestational age and neonatal ultrasound abnormalities: the EPIPAGE cohort study. Pediatrics 117: 828–835

    Google Scholar 

  • AWMF online (1999) Frühgeburt an der Grenze der Lebensfä¬higkeit des Kindes. LeitlinieNr. 024/019:1-8 , http://www.uni-duesseldorf.de/AWMF/ll-na/024-019.htm. Abgerufen 24.10.2007

  • Ballabh P, Kumari J, Al Kouatly HB et al. (2003) Neonatal out- come of triplet versus twin and singleton pregnancies: a matched case control study. Eur J Obstet Gynecol Reprod Biol 107:28–36

    PubMed  Google Scholar 

  • Beauchamp T, Childress J (2001) Principles of biomedical ethics. Oxford University Press, Oxford

    Google Scholar 

  • Berger TM, Büttiker V, Fauchère JC et al., Arbeitsgruppe der schweizerischen Gesellschaft für Neonatologie (2002) Empfehlungen zurBetreuung von Frühgeborenen an der Grenze zur Lebensfähigkeit (Gestationsalter 22-26 SSW). Schweiz Arztez 83:1589–1595

    Google Scholar 

  • Bundesärztekammer (2004) Grundsätze zur ärztlichen Sterbe-begleitung. Dtsch Arztebl 101 :A1298-A21299. http:// www.bundesärztekammer.de, Suchbegriff »Grundsätze Sterbebegleitung«. Aktualisiert 15.09.2006

  • Casell KA, O’Connell CM, Baskett TF (2004) The origins and outcomes of triplet and quadruplet pregnancies in Nova Scotia: 1980 to 2001. Am J Perinatol 21:439–445

    Google Scholar 

  • Deutscher Juristentag (2006) Beschlüsse des 66. Deutschen Juristentages. Stuttgart, 19.-22.09.2006. Deutscher Juris¬tentag e.V., Bonn. http://www.djt.de/files/djt/66/66_DJT_Beschluesse.pdf. Abgerufen 24.10.2007

  • Dilch A, Urlesberger B, Berger J, Österreichische Gesellschaft für Kinder- und Jugendheilkunde (2005) Erstversorgung von Frühgeborenen an der Grenze der Lebensfähigkeit. Monatsschr Kinderheilkd 153:711-715. http://www.doc-s4you.at. Abgerufen 24.10.2007

    Google Scholar 

  • Doyle LW, Betheras FR, Ford GW et al. (2000) Survival, cranial ultrasound and cerebral palsy in very low birth weight infants: 1980 versus 1990. J Paediatr Child Health 36:7–12

    PubMed  CAS  Google Scholar 

  • Drillien CM (1958) Growth and development in a group of children of very low birth weight. Arch Dis Child 33:10

    PubMed  CAS  Google Scholar 

  • Engelhardt T Jr, Khushf G (1995) Futile care for the critically ill patient. Curr Opin Crit Care 1:329–333

    Google Scholar 

  • ESHRE Capri Workshop Group (2000) Multiple gestation pregnancy. Hum Reprod 15:1856–1864

    Google Scholar 

  • FIGO Committee Report (2006) Ethical recommendations on multiple pregnancy and multifetal reduction. FIGO Committee for the Ethical Aspects of Human Reproduction and Women’s Health. Int J Gynecol Obstet 92:331–332

    Google Scholar 

  • Fletcher J (1973) Moral aspects. In: Round table: decision-mak- ing; moral, legal, and institutional implications. Ross-con- ference. Ross Labs, Report 65. Columbus, Ohio; pp 70–71

    Google Scholar 

  • Garrard E, Wilkinson S (2005) Passive euthanasia. J Med Ethics 31:64–68

    PubMed  CAS  Google Scholar 

  • Hansman G, Humpl T, Zimmerman A et al. (2007) Neue Reani-mationsrichtlinien der ILCOR bei Früh- und Reifgeborenen: kritische Diskussion und Vorschläge zur praktischen Umsetzung. Klin Padiatr 219:50–57

    Google Scholar 

  • Hiersche HD, Hirsch G, Graf-Baumann T (1987) Grenzen ärztli¬cher Behandlungspflicht bei schwerstgeschädigten Neugeborenen »Einbecker Empfehlung«. Springer, Berlin Heidelberg New York Tokio

    Google Scholar 

  • Hoekstra RE, Ferrara TB, Couser RJ et al. (2004) Survival and long-term neurodevelopmental outcome of extremely premature infants born at 23-26 weeks’ gestational age at a tertiary center. Pediatrics 113:e1-e6

    Google Scholar 

  • Hohenauer L (1971) Studien zur intrauterinen Dystrophie, II: Folgen intrauteriner Mangelernährung beim Menschen. Eine vergleichende Studie an Zwillingspaaren mit verschiedenen Geburtsgewichten. Padiatr Padol 6:17–30

    CAS  Google Scholar 

  • Maio G (1999) Ethik ohne Grenzen? Die französischen Bioethik-Gesetze und die Präimplantationsdiagnostik. Frauenarzt 40:33–37

    Google Scholar 

  • Markestad T, Kaaresen PI, Rnnesstads A et al. (2005) Early death, morbidity, and need of treatment among extremely pre-mature infants. Pediatrics 115:1289–1298

    PubMed  Google Scholar 

  • Mercurio MR (2006) Parental authority, patient’s best interest and refusal of resuscitation at borderline gestational age (commentary). J Perinatol 26:452–457

    PubMed  CAS  Google Scholar 

  • Merkel R (2001) Früheuthanasie. Rechtsethische und straf-rechtliche Grundlagen ärztlicher Entscheidungen über Leben und Tod in der Neonatalmedizin. Nomos, Baden-Baden; S 67

    Google Scholar 

  • Niermeyer S, Kattwinkel J, van Reempts P et al. (2000) International Guidelines for Neonatal Resuscitation: an excerpt from the Guidelines 2000 for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care. International Consensus of Science Pediatrics 106:e29

    Google Scholar 

  • Rawlings G, Stewart A, Reynolds EO, Strang LB (1971) Chang¬ing prognosis for infants of very low birth weight. Lancet I:516–519

    Google Scholar 

  • Rijken M, Stoelhorst GM, Martens SE et al. (2003) Mortality and neurologic, mental, and psychomotor development at 2 years in infants born less than 27 weeks’ gestation: the Leiden follow-up project on prematurity. Pediatrics 112:351–358

    PubMed  Google Scholar 

  • Saigal S, Feeny D, Furlong W et al. (1994) Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years. J Pediatr 125:418–425

    PubMed  CAS  Google Scholar 

  • Salle B, Andre M, Cret MME, Richard P et al. (1972) La maladie des membranes hyalines chez le nouveau-né. Expérience d’un centre de pathologie néo-natale. Pediatrie 27:27–36

    PubMed  CAS  Google Scholar 

  • Sayeed SA (2005) Baby doe redux? The Departement of Health and Human Services and the Born-Alive Infants Protec¬tion Act of 2002: a cautionary note on normative neonatal practice. Pediatrics 116:e576–3585

    Google Scholar 

  • Schechner S (1980) For the 1980s: how small is too small? Clin Perinatol 7:135–143

    PubMed  CAS  Google Scholar 

  • Stewart AL, Turcan DM, Rawlings G, Reynolds EO (1977) Prognosis for infants weighing 1000 g or less at birth. Arch Dis Child 52:97–104

    PubMed  CAS  Google Scholar 

  • Stewart AL, Reynolds EO, Lipscomb AP (1981) Outcome for infants of very low birthweight: survey of the world literature. Lancet I:1038–1041

    Google Scholar 

  • Tudehope D, Burns YR, Gray PH et al. (1995) Changing patterns of survival and outcome at 4 years of children who weighted 500-999 g at birth. J Paediatr Child Health 31:451–456

    PubMed  CAS  Google Scholar 

  • Veen S, Fekkes M, Koopman HM et al. (2001) Quality of life in preschool children born perterm. Dev Med Child Neurol 43:460–465

    PubMed  Google Scholar 

  • Verhagen E, Sauer PJ (2005) The Groningen protocol - eutha- nasia in severely ill newborns. N Engl J Med 352:959–962

    PubMed  CAS  Google Scholar 

  • Von Loewenich V (2003) Ethische Probleme bei Frühgeborenen. Monatsschr Kinderheilkd 151:1263–1269

    Google Scholar 

  • Watts JL, Saigal S (2006) Outcome of extreme prematurity: as information increases so do the dilemmas (review). Arch Dis Child Fetal Neonatal Ed 91:F221-F225

    PubMed  CAS  Google Scholar 

  • Wissenschaftlicher Beirat der Bundesärztekammer (1998) Richt-linien zur Feststellung des Hirntodes, 3. Fortschreibung 1997 mit Ergänzung gemäß Transplantationsgesetz (TPG). 24. Juli 1998. http://www.bundesaerztekammer.de, Suchwort »Hirntod«. Abgerufen 24.10.2007

  • Working Group »Ethical Aspects of Neonatology" of the Sec- tion Neonatology of the Paediatric Association of the Netherlands (NVK), approved by the board of the NVK (2004) Guidelines for End-of-Life Decision Making in Neo¬natology. English version 06.06.2004; Issued by the Versi¬on 2000. Niederländische Fassung auf der geschlossenen Website der niederländischen Gesellschaft für Kinderheilkunde. Mitgeteilt am 06.06.2004 für die Vorbereitung der 30. Jahrestagung der GNPI (Gesellschaft für Neonatologie und pädiatrische Intensivmedizin), Ulm, 24.¬26.06.2004 von Kollé L (Nijmegen)

    Google Scholar 

  • Zimmerman M, Zimmerman R, von Loewenich V (1997) Die Behandlungspraxis bei schwerstgeschädigten Neugebo¬renen und Frühgeborenen an deutschen Kliniken. Kon¬zeption, Ergebnisse und ethische Implikationen einer empirischen Untersuchung. Ethik Med 9:57–77

    Google Scholar 

  • www.uni-potsdam.de/u/mrz/coe/emrk.htm. Abgeru-fen 15.01.2012

Zu Abschn. 7.3

  • Biermann A, Goetze H (2005) Sonderpädagogik. Eine Einführung. Kohlhammer, Stuttgart

    Google Scholar 

  • Biewer G (2009) Grundlagen der Heilpädagogik und Inklusi- ven Pädagogik. Klinkhardt, Bad Heilbrunn

    Google Scholar 

  • Bloomberg K, West D, Severe Communication Impairment Outreach Projects (1999) Triple C - Checklist of commu- nication competencies: assessment manual. SCIO, St. Kilda, Vic

    Google Scholar 

  • Borchert J (2007) Einführung in die Sonderpädagogik. Olden- bourg Wissenschaftsverlag, München

    Google Scholar 

  • Braun U (1996) Unterstütze Kommunikation. Selbst be-stimmmtes Leben, Düsseldorf

    Google Scholar 

  • Breau LM, Camfield CS, McGrath PJ, Finley GA (2003) The inci- dence of pain in children with severe cognitive impair- ments. Arch Pediatr Adolesc Med 157:1219–26

    PubMed  Google Scholar 

  • Bürli A (1991) Zur Situation schwerstbehinderter Menschen aus internationaler Sicht. In: Fröhlich A (Hrsg) Pädago¬gik bei schwerster Behinderung. Handbuch der Sonderpädagogik, Bd 12. Wissenschaftsverlag Spiess, Berlin

    Google Scholar 

  • DIMDI (2004) CF - Internationale Klassifikation der Funktions-fähigkeit, Behinderung und Gesundheit. http://www.dimdi.de/static/de/klassi/icf/index.htm. Abgerufen 15.01.2012

  • DIMDI (2011) ICF - CY: Internationale Klassifikation der Funk-tionsfähigkeit, Behinderung und Gesundheit bei Kindern und Jugendlichen. Deutsches Institut für Medizinische Dokumentation und Information (Hrsg). Huber, Bern

    Google Scholar 

  • Drake R, Frost J, Collins JJ (2003) The symptoms of dying children. J Pain Symptom Manage 26:594–603

    PubMed  Google Scholar 

  • 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

    Google Scholar 

  • Fine JD, Johnson LB, Weiner M, Suchindran C (2004) Assess- ment of mobility, activities and pain in different subtypes of epidermolysis bullosa. Clin Dermatol 29:122–7

    Google Scholar 

  • Fornefeld B (2008) Menschen mit Komplexer Behinderung. Selbstverständnis und Aufgaben der Behindertenpädagogik. Reinhardt, München

    Google Scholar 

  • Fröhlich A, Simon A (2004) Gemeinsamkeiten entdecken. Mit schwerbehinderten Kindern kommunizieren. Verlag Selbstbestimmtes Leben, Düsseldorf

    Google Scholar 

  • Gesundheitsberichterstattung des Bundes (2010) Geschäfts¬und Rechnungsergebnisse der sozialen Pflegeversiche¬rung. http://www.bmg.bund.de. Abgerufen 15.01.2012

  • Hedderich I (2006) Unterstützte Kommunikation in der Früh-förderung: Grundlagen - Diagnostik - Beispiele. Klinkhardt, Bad Heilbrunn

    Google Scholar 

  • Hunt A, Burne R (1995) Medical and nursing problems of children with neurodegenerative disease. Palliat Med 9:19

    Google Scholar 

  • Kristen U (1997) Praxis Unterstützte Kommunikation. Eine Ein-führung. In: Bundesverband f. körper- u. mehrfachbehinderte Menschen (Hrsg). Verlag Selbstbestimmtes Leben, Düsseldorf

    Google Scholar 

  • Mall W (2008) Kommunikation ohne Voraussetzungen: Mit Menschen mit schwersten Beeinträchtigungen. Ein Werkheft. Universitätsverlag Winter, Heidelberg

    Google Scholar 

  • Mar H, Sall N (1999) Dimensions of communication: Assessing the communication skills of individuals with disabilities. St Joseph’s Children’s Hospital, Paterson NJ

    Google Scholar 

  • Ravilly S, Robinson W, Suresh S, Wohl ME, Berde CB (1996) Chronic pain in cystic fibrosis. Pediatr 98:741–7

    CAS  Google Scholar 

  • Robinson WM, Ravilly S, Berde C, Wohl ME (1997) End-of-life care in cystic fibrosis. Pediatr 100:205–9

    CAS  Google Scholar 

  • Schlack HG, Thyen U, von Kries R (2009) Sozialpädiatrie. Springer, Heidelberg

    Google Scholar 

  • 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

    Google Scholar 

  • Schuntermann MF (2009) Einführung in die ICF (Grundkurs -Übungen - offene Fragen). Ecomed Medizin, Hamburg

    Google Scholar 

  • Speck O, Thalhammer M (1974) Die Rehabilitation der Geistig-behinderten: ein Beitrag zur sozialen Integration. Reinhardt, München

    Google Scholar 

  • Tietze AL, Blankenburg M, Hechler T, Michel E, Koh M, Schlüter B et al. (2011) Sleep disturbances in children with mul¬tiple disabilities. Sleep Med Rev 16:117–27

    PubMed  Google Scholar 

  • World Health Organisation (WHO) (2001) International clas- sification of functioning, disability and health (ICF). WHO, Genf

    Google Scholar 

  • Zernikow B, Michel E, Häberle J (2007) Palliativmedizin bei genetischen Erkrankungen der Kindheit. In: Nauck F, Radbruch L, Aulbert E (Hrsg) Lehrbuch der Palliativmedizin. Schattauer, Stuttgart New York

    Google Scholar 

Zu Abschn. 7.4

  • Andres AM, Thompson J, Grant W, Botha J, Sunderman B, Antonson D et al. (2008) Repeat surgical bowel lengthening with the STEP procedure. Transplantation 85:1294–9

    PubMed  Google Scholar 

  • Beath SV, Davies P, Papadopoulou A, Khan AR, Buick RG, Corkery JJ et al. (1996) Parenteral nutrition - related cho- lestasis in postsurgical neonates: Multivariate analysis of risk factors. J Pediatr Surg 31:604–6

    PubMed  CAS  Google Scholar 

  • Blaszyk H, Wild PJ, Oliveira A, Kelly DG, Burgart LJ (2005) Hepatic copper in patients receiving long-term total parenteral nutrition. J Clin Gastroenterol 39:318–20

    PubMed  Google Scholar 

  • Bongaerts G, Bakkeren J, Severijnen R, Sperl W, Willems H, Naber T et al. (2000) Lactobacilli and acidosis in children with short small bowel. J Pediatr Gastroenterol Nutr 30:288–93

    PubMed  CAS  Google Scholar 

  • Buchman AL, Fryer J, Wallin A, Ahn CW, Polensky S, Zaremba K (2006) Clonidine reduces diarrhea and sodium loss in patients with proximal jejunostomy: a controlled study. J Parent Ent Nutr 30:487–91

    CAS  Google Scholar 

  • Cavicchi M, Beau P, Crenn P, Degott C, Messing B (2000) Preva- lence of liver disease and contributing factors in patients receiving home parenteral nutrition for permanent intes¬tinal failure. Ann Intern Med 132:525–32

    PubMed  CAS  Google Scholar 

  • Christensen RD, Henry E, Wiedmeier SE, Burnett J, Lambert DK (2007) Identifying patients, on the first day of life, at high- risk of developing parenteral nutrition-associated liver disease. J Perinatol 27:284–90

    PubMed  CAS  Google Scholar 

  • Clayton PT, Whitfield P, Iyer K (1998) The role of phytosterols in the pathogenesis of liver complications of pediatric parenteral nutrition. Nutrition 14:158–64

    PubMed  CAS  Google Scholar 

  • Cooper A, Floyd TF, Ross AJ, Bishop HC, Templeton JM, Ziegler MM (1984) Morbidity and mortality of short-bowel syn- drome acquired in infancy: an update. J Pediatr Surg 19:711–8

    PubMed  CAS  Google Scholar 

  • Duro D, Kamin D, Duggan C (2008) Overview of pediatric short bowel syndrome. J Pediatr Gastroenterol Nutr 47:S33-S36

    PubMed  Google Scholar 

  • Gawecka A, Michalkiewicz J, Kornacka MK, Luckiewicz B, Ku- biszewska I (2008) Immunologic properties differ in pre- term infants fed olive oil vs soy-based lipid emulsions during parenteral nutrition. J Parent Ent Nutr 32:448–53

    CAS  Google Scholar 

  • Goulet O, Colomb-Jung V, Joly F (2009) Role of the colon in short bowel syndrome and intestinal transplantation. J Pediatr Gastroenterol Nutr 48:S66-S71

    PubMed  Google Scholar 

  • Greenberg RG, Moran C, Ulshen M, Smith PB, jamin Jr DK, Cohen-Wolkowiez M (2010) Outcomes of catheter-asso- ciated infections in pediatric patients with short bowel syndrome. J Pediatr Gastroenterol Nutr 50:460–2

    PubMed  Google Scholar 

  • Guertin F, Roy CC, Lepage G, Perea A, Giguère R, Yousef I et al. (1991) Effect of taurine on total parenteral nutrition-asso- ciated cholestasis. J Parent Ent Nutr 15:247–51

    CAS  Google Scholar 

  • Gura KM, Elisofon SA (2012) Parenteral nutrition-associated liver disease in infants. http://www.uptodate.com/con-tents/parenteral-nutrition-associated-liver-disease-in-infants. Abgerufen 07.03.2012

  • Halperin ML, Kamel KS (1996) D-lactic acidosis: turning sugar into acids in the gastrointestinal tract. Kidney Int 49:1–8

    PubMed  CAS  Google Scholar 

  • Hyman PE, Everett SL, Harada T (1986) Gastric acid hypersecre- tion in short bowel syndrome in infants: Association with extent of resection and enteral feeding. J Pediatr Gastro- enterol Nutr 5:191–7

    CAS  Google Scholar 

  • Jeppesen PB, Staun M, Tjellesen L, Mortensen PB (1998) Effect of intravenous ranitidine and omeprazole on intestinal absorption of water, sodium, and macronutrients in pa- tients with intestinal resection. GUT 43:763–9

    PubMed  CAS  Google Scholar 

  • Kaufman SS, Loseke CA, Lupo JV, Young RJ, Murray ND, Pinch LW et al. (1997) Influence of bacterial overgrowth and intestinal inflammation on duration of parenteral nutri¬tion in children with short bowel syndrome. J Pediatr 131:356–61

    PubMed  CAS  Google Scholar 

  • King DR, Komer M, Hoffman J, Ginn-Pease ME, Stanley ME, Powell D et al. (1985) Broviac catheter sepsis: the natural history of an iatrogenic infection. J Pediatr Surg 20:728–33

    PubMed  CAS  Google Scholar 

  • Klein GL, Goldblum RM, Moslen MT, Pyron DL, Mann PA, Lee TC et al. (1993) Increased biliary transferrin excretion fol- lowing parenteral aluminum administration to rats. Phar- macol Toxicol 72:373–6

    CAS  Google Scholar 

  • Ladefoged K, Christensen KC, Hegnh+©jJ, Jarnum S (1989) Effect of a long acting somatostatin analogue SMS 201-995 on jejunostomy effluents in patients with severe short bowel syndrome. GUT 30:943–9

    PubMed  CAS  Google Scholar 

  • Mager DR, Marcon M, Wales P, Pencharz PB (2008) Use of N-acetyl cysteine for the treatment of parenteral nutri- tion-induced liver disease in children receiving home parenteral nutrition. J Pediatr Gastroenterol Nutr 46:220–3

    PubMed  Google Scholar 

  • McDoniel K, Taylor B, Huey W, Eiden K, Everett S, Fleshman J et al. (2004) Use of clonidine to decrease intestinal fluid losses in patients with high-output short-bowel syn- drome. J Parent Ent Nutr 28:265–8

    Google Scholar 

  • McMillan NB, Mulroy C, MacKay MW, McDonald CM, Jackson WD (2008) Correlation of cholestasis with serum copper and whole-blood manganese levels in pediatric patients. Nutr Clin Pract 23:161–5

    PubMed  Google Scholar 

  • Nightingale JMD, Lennard-Jones JE, Walker ER, Farthing MJG (1990) Jejunal efflux in short bowel syndrome. Lancet 336:765–8

    PubMed  CAS  Google Scholar 

  • Obialo CI, Clayman RV, Matts JP, Fitch LL, Buchwald H, Gillis M et al. (1991) Pathogenesis of nephrolithiasis post-partial ileal bypass surgery: case-control study. The POSCH Group. Kidney Int 39:1249–54

    PubMed  CAS  Google Scholar 

  • Ordonez P, Sondheimer JM, Fidanza S, Wilkening G, Hoffen- berg EJ (2006) Long-term outcome of a patient with con¬genital short bowel syndrome. J Pediatr Gastroenterol Nutr 42:576–80

    PubMed  Google Scholar 

  • Pauley-Hunter RJ, Vanderhoof JA (2012) Pathophysiology of the short bowel syndrome. http://www.uptodate.com/contents/pathophysiology-of-the-short-bowel-syn-drome. Abgerufen 07.03.2012

  • Schmidt-Sommerfeld E, Snyder G, Rossi TM, Lebenthal E (1990) Catheter-related complications in 35 children and adolescents with gastrointestinal disease on home parenteral nutrition. J Parenter Enterol Nut 14:148–51

    CAS  Google Scholar 

  • Sondheimer JM, Asturias E, Cadnapaphornchai M (1998) In- fection and cholestasis in neonates with intestinal resec- tion and long-term parenteral nutrition. J Pediatr Gastro- enterol Nutr 27:131–7

    CAS  Google Scholar 

  • Thompson JS, Ferguson DC (2000) Effect of the distal remnanton ileal adaptation. J Gastrointest Surg 4:430–4

    PubMed  CAS  Google Scholar 

  • Thompson JS, Vanderhoof JA, Antonson DL (1985) Intestinal tapering and lengthening for short bowel syndrome. J Pediatr Gastroenterol Nutr 4:495–7

    PubMed  CAS  Google Scholar 

  • Vanderhoof JA, Jensen C, Hoppin A (2012) Management of the short bowel syndrome. http://www.uptodate.com/con-tents/management-of-the-short-bowel-syndrome-in-children. Abgerufen 07.03.2012

  • Vanderhoof JA, Langnas AN, Pinch LW, Thompson JS, Kaufman SS (1992) Short bowel syndrome. J Pediatr Gastroenterol Nutr 14:359–70

    PubMed  CAS  Google Scholar 

  • Vanderhoof JA, Pauley-Hunter RJ (2012) Chronic complica- tions of the short bowel syndrome in children. http://www.uptodate.com/contents/chronic-complications-of-the-short-bowel-syndrome-in-children. Abgerufen 07.03.2012

  • Vanderhoof JA, Young RJ, Murray N, Kaufman SS (1998) Treat¬ment strategies for small bowel bacterial overgrowth in short bowel syndrome. J Pediatr Gastroenterol Nutr 27:155–60

    PubMed  CAS  Google Scholar 

  • Williams HE (1978) Oxalic acid and the hyperoxaluric syn-dromes. Kidney Int 13:410–7

    PubMed  CAS  Google Scholar 

  • Zaman N, Tam YK, Jewell LD, Coutts RT (1996) Effects of taurine supplementation in parenteral nutrition-associated hep- atosteatosis and lidocaine metabolism. A study using isolated rat liver perfusion. Drug Metab Dispos 24:534–41

    Google Scholar 

  • http://www.gpge.de. Abgerufen 17.05.2012

  • http://www.espghan.org. Abgerufen 17.05.2012

Zu Abschn. 7.5

  • Baker JN, Harper JA, Kane JR, Hicks J, Ward D, Hinds PS et al. (2011) Implementation and Evaluation of an Automated Patient Death Notification Policy at a Tertiary Pediatric Oncology Referral Center. J Pain Symptom Manage 42:652–6

    PubMed  Google Scholar 

  • Beretta S, Polastri D, Clerici CA, Casanova M, Cefalo G, Ferrari A et al. (2010) End of life in children with cancer: Experi- ence at the Pediatric Oncology Departement of the Isti- tuto Nazionale in Milan. Pediatr Blood Cancer 54:88–91

    PubMed  Google Scholar 

  • Bluebond-Langner M, Belasco JB, Goldman A, Belasco C (2007) Understanding parents’ approaches to care and treatment children with cancer when standard therapy has failed. J Clin Oncol 25:2414–9

    PubMed  Google Scholar 

  • Boucek MM, Waltz DA, Edwards LB, Keck BM, Trulock EP, Hertz MI (2006) Registry of the International Society for Heart and Lung Transplantation: tenth official pediatric lung and heart/lung transplantation report–2007 J Heart Lung Transp 25:893–903

    Google Scholar 

  • Bradshaw G, Hinds P, Lensing S, Gattuso JS, Razzouk BI (2005) Cancer-related deaths in children and adolescents. J Pall Med 8:86–95

    Google Scholar 

  • Collins JJ, Byrnes ME, Dunkel IJ, Lapin J, Nadel T, Thaler HT et al. (2000) The measurement of symptoms in children with cancer. J Pain Symptom Manage 19:363–77

    PubMed  CAS  Google Scholar 

  • Delgado E, Barfield RC, Baker JN, Hinds PS, Yang J, Nambayan A et al. (2010) Availability of palliative care services for children with cancer in economically diverse regions of the world. Eur J Cancer 46:2260–6

    PubMed  Google Scholar 

  • Desforges JF, Byrne TN (1992) Spinal cord compression from epidural metastases. N Engl J Med 327:614–9

    Google Scholar 

  • Dussel V, Joffe S, Hilden JM, Watterson-Schaeffer J, Weeks JC, Wolfe J (2010) Considerations About Hastening Death Among Parents of Children Who Die of Cancer. Arch Pediatr Adolesc Med 164:231–7

    PubMed  Google Scholar 

  • Frühwald MC (2006) ZNS-Tumoren im Kindes- und Jugendal¬ter: Diagnostik, Therapiemöglichkeiten und palliative Ansätze. Kinder- und Jugendarzt 37:633–45

    Google Scholar 

  • Frühwald MC, Rutkowski S (2011) Tumors of the Central Ner- vous System in Children and Adolescents. Dt Aerztebl int 108:390–7

    Google Scholar 

  • Goldman A (1996) Home care of dying children. J Palliat Care 12:16–9

    PubMed  CAS  Google Scholar 

  • Goldman A, Hewitt M, Collins GS, Childs M, Hain R, United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses’ Forum Palliative Care Working Group (2006) Symptoms in children/young people with progressive malignant disease: United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatr 117:e1179-e1186

    Google Scholar 

  • Goodenough B, Drew D, Higgins S, Trethewie S (2004) Be- reavement outcomes for parents who lose a child to can- cer: Are place of death and sex of parent associated with differences in psychological functioning? Psych Oncol 13:779–91

    Google Scholar 

  • Goodlin SJ, Hauptman PJ, Arnold R, Grady K, Hershberger RE, Kutner J et al. (2004) Consensus statement: palliative and supportive care in advanced heart failure. J Card Fail 10:200–9

    PubMed  Google Scholar 

  • Hechler T, Blankenburg M, Friedrichsdorf S, Garske D, Hübner B, Menke A et al. (2008) Parents’ perspective on symp¬toms, quality of life, characteristics of death and end-of- life decisions for children dying from cancer. Klin Pädiatr 220:166–74

    PubMed  CAS  Google Scholar 

  • Hunt H, Valdimarsdottir U, Mucci L, Kreicbergs U, Steineck G (2006) When death appears best for the child with severe malignancy: A nationwide parental follow-up. Palliat Med 20:567–77

    PubMed  Google Scholar 

  • Hynson JL, Sawyer SM (2001) Paediatric palliative care: dis- tinctive needs and emerging issues. J Paediatr Child Health 37:323–5

    PubMed  CAS  Google Scholar 

  • Jalmsell L, Kreicbergs U, Onelöv E, Steineck G, Henter JI (2006) Symptoms affecting children with malignancies during the last month of life: A nationwide follow-up. Pediatr 117:1314–20

    Google Scholar 

  • Janssen G, Friedland C, Richter U, Leonhardt H, Gobel U (2004 May) Ambulante palliativmedizinische Versorgung krebs¬kranker Kinder und ihrer Familien [Out-patient palliative care of children with cancer and their families]. Klin Pädiatr 216:183–8

    PubMed  CAS  Google Scholar 

  • Kars MC, Grypdonck MHF, Beishuizen A, Meijer-van den Bergh E, van Delden JJM (2010) Factors influencing parental readiness to let their child with cancer die. Pediatr Blood Cancer 54:1000–8

    PubMed  Google Scholar 

  • Kleihues P, Louis DN, Scheithauer BW, Rorke LB, Reifenberger G, Burger PC et al. (2002) The WHO classification of tumors of the nervous system. J Neuropath Experiment Neurol 61:215-25 ; discussion 226–229

    Google Scholar 

  • Klopfenstein KJ, Hutchison C, Clark C, Young D, Ruymann FB (2001) Variables influencing end-of-life care in children and adolescents with cancer. J Pediatr Hematol Omcol 23:481–6

    CAS  Google Scholar 

  • Korinthenberg R (2004) Hereditäre progrediente und nicht-progrediente Erkrankungen der peripheren Nerven und der Muskulatur. In: Reinhardt D (Hrsg) Therapie der Krankheiten im Kindes- und Jugendalter. Springer, Berlin Heidelberg New York Tokio

    Google Scholar 

  • Kreicbergs U (2006) 7th International Symposium on Pediatric Pain 2006, Vancouver, Canada

    Google Scholar 

  • Kreicbergs U, Lannen P, Onelöv E, Wolfe J (2007) Parental grief after losing a child to cancer: Impact of professional and social support on long-term outcomes. J Clin Oncol 25:3307–12

    PubMed  Google Scholar 

  • Kreicbergs U, Valdimarsdottir U, Onelöv E, Björk O, Steineck G, Henter JI (2005) Care-related distress. A nationwide study of parents who lost their child to cancer. J Clin Oncol 23:9162–71

    PubMed  Google Scholar 

  • Kreicbergs U, Valdimarsdottir U, Onelöv E, Henter JI, Steineck G (2004a) Anxiety and depression in parents 4-9years after the loss of a child owing to malignancy: A popula- tion-based follow-up. Psychol Med 34:1431–41

    Google Scholar 

  • Kreicbergs U, Valdimarsdottir U, Onelöv E, Henter JI, Steineck G (2004b) Talking about death with children who have severe malignant disease. N Engl J Med 351:1175–86

    CAS  Google Scholar 

  • Kreicbergs U, Valdimarsdottir U, Steineck G, Henter JI (2004c) A population-based nationwide study of parents’ percep- tions of a questionnaire on their child’s death due to can¬cer. Lancet 364:787–9

    Google Scholar 

  • Loghin M, Levin VA (2006) Headache related to brain tumors.Curr Treat Opt Neurol 8:21–32

    Google Scholar 

  • Mack JW, Hilden JM, Watterson J, Moore C, Turner B, Holcombe EG et al. (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23:9155–61

    PubMed  Google Scholar 

  • McCallum DE, Byrne P, Bruera E (2000) How children die in hospital. J Sympt Manage 20:417–23

    CAS  Google Scholar 

  • Norozi K, Wessel A, Alpers V, Arnhold JO, Geyer S, Zoege M et al. (2006) Incidence and risk distribution of heart failure in adolescents and adults with congenital heart disease after cardiac surgery. Am J Cardiol 97:1238–43

    PubMed  Google Scholar 

  • Shah S, Weitman S, Langevin AM, Bernstein M, Furman W, Pratt C (1998) Phase I therapy trials in children with cancer. J Pediatr Hematol Omcol 20:431–8

    CAS  Google Scholar 

  • Sirkiä K, Saarinen UM, Ahlgren B, Hovi L (1997) Terminal care of the child with cancer at home. Acta Paediatr 86:1125–30

    PubMed  Google Scholar 

  • Streffer JR, Bitzer M, Schabet M, Dichgans J, Weller M (2001) Response of radiochemotherapy-associated cerebral edema to a phytotherapeutic agent, H15. Neurology 56:1219–21

    PubMed  CAS  Google Scholar 

  • Surkan PJ, Dickman PW, Steineck G, Onelöv E, Kreicbergs U (2006a) Home care of a child dying of malignancy and parental awareness of a child's impending death. Palliat Med 20:161–9

    Google Scholar 

  • Surkan PJ, Kreicbergs U, Valdimarsdottir U, Nyberg U, Onelöv E, Dickman PW 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 Pall Med 9:317–31

    Google Scholar 

  • Ullrich C, Dussel V, Hilden JM (2010) Fatigue in Children with Cancer at the End of Life. J Pain Symptom Manage 40: 483–94

    PubMed  Google Scholar 

  • Valdimarsdottir U, Kreicbergs U, Hauksdottir A, Hunt H, Onelöv E, Henter JI 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 8:706–14

    PubMed  Google Scholar 

  • Vickers JL, Carlise C (2000) Choices and control: parental expe- riences in pediatric terminal home care. J Pediatr Oncol Nurs 17:12–21

    PubMed  CAS  Google Scholar 

  • Watterson G, Goldman A, Michalski A (2002) Corticosteroids in the palliative phase of paediatric brain tumours. Arch Dis Child 86:A76

    Google Scholar 

  • Wilne SH, Ferris RC, Nathwani A, Kennedy CR (2006) The presenting features of brain tumours: a review of 200 cases. Arch Dis Child 91:502–6

    PubMed  CAS  Google Scholar 

  • Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S et al. (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342:326–33

    PubMed  CAS  Google Scholar 

  • http://www.kinderkrebsregister.de. Abgerufen 15.01.2012

Zu Abschn. 7.6

  • Ezeanolue EE, Wodi AP, Patel R, Dieudonne A, Oleske JM (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 38:719–25

    PubMed  Google Scholar 

  • Gaughan DM, Hughes MD, Oleske JM, Malee K, Gore CA, Nach-man S (2004) Psychiatric hospitalizations among children and youths with human immunodeficiency virus infection. Pediatr 113:e544-e551

    Google Scholar 

  • Grubman S, Gross E, Lerner-Weiss N, Hernandez M, McSherry GD, Hoyt LG et al. (1995) Older children and adolescents living with perinatally acquired human immunodeficiency virus infection. Pediatr 95:657–63

    CAS  Google Scholar 

  • 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 18:3–11

    PubMed  Google Scholar 

  • Kapogiannis BG, Soe MM, Nesheim SR, Abrams EJ, Carter RJ, Farley J et al. (2011) Mortality trends in the US perinatal AIDS Collaborative Transmission Study (1986G£62004). Clin Infect Dis 53:1024–34

    PubMed  Google Scholar 

  • Lee GM, Gortmaker SL, McIntosh K, Hughes MD, Oleske JM (2006) Quality of life for children and adolescents: impact of HIV infection and antiretroviral treatment. Pediatr 117;273–83

    Google Scholar 

  • Oleske JM, Czarniecki L (1999) Continuum of palliative care: lessons from caring for children infected with HIV-1. Lan- cet 345:1287–91

    Google Scholar 

  • http://www.cdc.gov/mmwr/preview/mmwrhtml/00032890.htm. Abgerufen 17.03.2012

  • http://www.hivbuch.de. Abgerufen 17.03.2012

  • http://www.rki.de. Abgerufen 04.04.2012

Zu Abschn. 7.7

  • Arzt M, Schulz M, Wensel R, Montalvan S, Blumberg FC, Riegger GAJ et al. (2005) Nocturnal continuous positive air- way pressure improves ventilatory efficiency during exercise in patients with chronic heart failure*. Chest 127;794–802

    PubMed  Google Scholar 

  • Back AL, Arnold RM, Quill TE (2003) Hope for the best, and prepare for the worst. Ann Intern Med 138:439–43

    PubMed  Google Scholar 

  • Barnea O, Austin EH, Richman B, Santamore WP (1994) Balanc- ing the circulation: theoretic optimization of pulmonary/ systemic flow ratio in hypoplastic left heart syndrome. J Am Coll Cardiol 24:1376–81

    PubMed  CAS  Google Scholar 

  • Berger J, Gartner J (2006) X-linked adrenoleukodystrophy: clinical, biochemical and pathogenetic aspects. Bio-chimica et Biophysica Acta (BBA) - Molecular Cell Research 1763:1721–32

    CAS  Google Scholar 

  • Boucek MM, Waltz DA, Edwards LB, Keck BM, Trulock EP, Hertz MI (2006) Registry of the International Society for Heart and Lung Transplantation: 10th official pediatric lung and heart/lung transplantation report 2007. J Heart Lung Transp 25:893–903

    Google Scholar 

  • Brickner ME, Hillis LD, Lange RA (2000a) Congenital heart disease in adults - first of two parts. N Engl J Med 342: 256–63

    CAS  Google Scholar 

  • Brickner ME, Hillis LD, Lange RA (2000b) Congenital heart disease in adults - second of two parts. N Engl J Med 342:334–42

    CAS  Google Scholar 

  • Broberg CS, Bax BE, Okonko DO, Rampling MW, Bayne S, Harries C et al. (2006) Blood viscosity and its relationship to iron deficiency, symptoms, and exercise capacity in adults with cyanotic congenital heart disease. J Am Coll Cardiol 48:356–65

    PubMed  Google Scholar 

  • Buchhorn R, Hulpke-Wette M, Ruschewski W, Ross RD, Fielitz J, Pregla R et al. (2003) Effects of therapeutic beta blockade on myocardial function and cardiac remodelling in congenital cardiac disease. Cardiol Young 13:36–43

    PubMed  Google Scholar 

  • De Filippis AP, Law K, Curtin S, Eckman JR (2007) Blood is thicker than water: the management of hyperviscosity in adults with cyanotic heart disease. Cardiol Rev 15:31–4

    Google Scholar 

  • Eicken A, Kolb C, Lange S, Brodherr-Heberlein S, Zrenner B, Schreiber C et al. (2006) Implantable cardioverter defibril- lator (ICD) in children. Int J Cardiol 107:30–5

    PubMed  Google Scholar 

  • Gewillig M (2005) The fontan circulation. Heart 91:839–46

    PubMed  Google Scholar 

  • Goodlin SJ, Hauptman PJ, Arnold R, Grady K, Hershberger RE, Kutner J et al. (2004) Consensus statement: palliative and supportive care in advanced heart failure. J Card Fail 10;200–9

    PubMed  Google Scholar 

  • Gupta S, Giuffre RM, Crawford S, Waters J (1998) Covert fears, anxiety and depression in congenital heart disease. Car- diol Young 8:491–9

    CAS  Google Scholar 

  • Hauptman PJ, Havranek EP (2005) Integrating palliative care into heart failure care. Arch Intern Med 165:374

    PubMed  Google Scholar 

  • Hetzer R, Stiller B (2006) Technology insight: Use of ventricular assist devices in children. Nat Clin Pract Cardiovasc Med 3:377–86

    PubMed  Google Scholar 

  • Huikuri HV, Castellanos A, Myerburg RJ (2001) Sudden death due to cardiac arrhythmias. N Engl J Med 345:1473–82

    PubMed  CAS  Google Scholar 

  • Jessup M, Brozena S (2003) Heart Failure. N Engl J Med 348:2007–18

    PubMed  Google Scholar 

  • Kaulitz R, Hofbeck M (2005) Current treatment and prognosis in children with functionally univentricular hearts. Arch Dis Child 90:757–62

    PubMed  CAS  Google Scholar 

  • Leitch CA (2000) Growth, nutrition and energy expenditure in pediatric heart failure. Progress Pediatr Cardiol 11:195–202

    Google Scholar 

  • Lopez-Candales A, Carron C, Schwartz J (2004) Need for hos- pice and palliative care services in patients with end- GÇÉstage heart failure treated with intermittent infusion of inotropes. Clin Cardiol 27:23–8

    PubMed  Google Scholar 

  • Marino BS (2002) Outcomes after the Fontan procedure. Curr Opin Pediatr 14:620–6

    PubMed  Google Scholar 

  • Meberg A, Lindberg H, Thaulow E (2005) Congenital heart de-fects: the patients who die. Acta Paediatr 94:1060–5

    PubMed  Google Scholar 

  • Mertens L, Hagler DJ, Sauer U, Somerville J, Gewillig M (1998) Protein-losing enteropathy after the Fontan operation: an international multicenter study. J Thor Cardiovasc Surg 115:1063–73

    CAS  Google Scholar 

  • Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H (2002) Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ 325:929

    PubMed  Google Scholar 

  • Musatto K (2005) Psychological aspects of acute and chronic heart failure in children. In: Shaddy RE, Wernowsky G (Hrsg) Pediatric heart failure. Taylor & Francis, London; pp 833–68

    Google Scholar 

  • Nieminen HP, Jokinen EV, Sairanen HI (2001) Late results of pediatric cardiac surgery in Finland. Circulation 104: 570–5

    PubMed  CAS  Google Scholar 

  • Pantilat SZ, Steimle AE (2004) Palliative care for patients with heart failure. JAMA 291:2476–82

    PubMed  CAS  Google Scholar 

  • Rutledge T, Reis VA, Linke SE, Greenberg BH, Mills PJ (2006) Depression in heart failure: a meta-analytic review of prevalence, intervention effects, and associations with clinical outcomes. J Am Coll Cardiol 48:1527–37

    PubMed  Google Scholar 

  • Selman L, Harding R, Beynon T, Hodson F, Coady E, Hazeldine C et al. (2007) Improving end-of-life care for patients with chronic heart failure: »Let's hope it'll get better, when I know in my heart of hearts it won't«. Heart 93:963–7

    PubMed  Google Scholar 

  • Shaddy RE, Wernovsky G (2005) Pediatric heart failure. Taylor & Francis, London

    Google Scholar 

  • Silka MJ, Bar-Cohen Y (2006) Pacemakers and implantable cardioverter-defibrillators in pediatric patients. Heart Rhythm 3:1360–6

    PubMed  Google Scholar 

  • Silka MJ, Hardy BG, Menashe VD, Morris CD (1998) A popula- tion-based prospective evaluation of risk of sudden cardiac death after operation for common congenital heart defects. J Am Coll Cardiol 32:245–51

    PubMed  CAS  Google Scholar 

  • Silka MJ, Szmuszkovicz JR (2005) Arrhythmias and sudden cardiac death in pediatric heart failure, Taylor & Francis, Boca Raton, FL

    Google Scholar 

  • Walsh EP, Cecchin F (2004) Recent advances in pacemaker and implantable defibrillator therapy for young patients. Curr Opin Cardiol 19:91–6

    PubMed  Google Scholar 

Zu Abschn. 7.8

  • Bach JR, Baird JS, Plosky D, Navado J, Weaver B (2002) Spinal muscular atrophy type 1: management and outcomes. Pediatr Pulmonol 34:16–22

    PubMed  Google Scholar 

  • 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 70:129

    PubMed  CAS  Google Scholar 

  • Bach JR, Saltstein K, Sinquee D, Weaver B, Komaroff E (2007) Long-term survival in Werdnig-Hoffmann disease. Am JPhys Med Rehabil 86:339–45

    Google Scholar 

  • Bach JR, Saporito LR (1996) Criteria for extubation and trache- ostomy tube removal for patients with ventilatory failure. Chest 110:1566–71

    PubMed  CAS  Google Scholar 

  • Bach JR, Vega J, Mojors J, Friedman A (2003) Spinal Muscular Atrophy Type 1. Am J Phys Med Rehabil 82:137–42

    PubMed  Google Scholar 

  • Birnkrant MD, David J, Pope MD, John F, Martin BS, James E et al. (1998) Treatment of type I spinal muscular atrophy with noninvasive ventilation and gastrostomy feeding. Pediatr Neurol 18:407–10

    PubMed  CAS  Google Scholar 

  • Carnevale FA (2007) Revisiting Goffman's Stigma: the social experience of families with children requiring mechanical ventilation at home. J Child Health Care 11:7–18

    PubMed  Google Scholar 

  • Carnevale FA, Leclerc F, Canoui P, Doussau A, Hubert P, Seguin MJ et al. (2006) The moral experience of parents regard- ing life-support decisions for their critically-ill children: A preliminary study in France. J Child Health Care 10:69–82

    PubMed  Google Scholar 

  • Chatwin M, Ross E, Hart N, Nickol AH, Polkey MI, Simonds AK (2003) Cough augmentation with mechanical insuffla- tion/exsufflation in patients with neuromuscular weak- ness. Eur Respir J 21:502

    PubMed  CAS  Google Scholar 

  • Choo-Kang LR, Ogunlesi FO, McGrath-Morrow SA, Crawford TO, Marcus CL (2002) Recurrent pneumothoraces associated with nocturnal noninvasive ventilation in a patient with muscular dystrophy. Pediatr Pulmonol 34:73–8

    PubMed  Google Scholar 

  • Dohna-Schwake C, Ragette R, Teschler H, Voit T, Mellies U (2006) IPPB-assisted coughing in neuromuscular disorders. Pediatr Pulmonol 41:551–7

    PubMed  Google Scholar 

  • Dubowitz V (1995) Chaos in the classification of SMA: a pos-sible resolution. Neuromuscular disorders: NMD 5:3

    PubMed  CAS  Google Scholar 

  • Eagle M, Baudouin SV, Chandler C, Giddings DR, Bullock R, Bushby K (2002) Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 12:926–9

    PubMed  Google Scholar 

  • Earle EA, Clarke SA, Elsar C, Sheppard L (2006) «Building a new normality": mothersexperiences of caring for a child with acute lymphoblastic leukaemia. Child: Care Health Develop 33:155–60

    Google Scholar 

  • Fauroux B, Sardet A, Foret D (1995) Home treatment for chronic respiratory failure in children: a prospective study. Eur Respir J 8:2062–6

    PubMed  CAS  Google Scholar 

  • Finder JD, Birnkrant D, Carll J, Farber HJ, Gozal D, Iannaccone ST et al. (2004 Aug 15) Respiratory Care of the Patient with Duchenne Muscular Dystrophy: ATS Consensus Statement. Am J Respir Crit Care Med 170:456–65

    PubMed  Google Scholar 

  • Girault C, Richard JC, Chevron V, Tamion F, Pasquis P, Leroy J et al. (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 116:521–34

    Google Scholar 

  • Gozal D (1998) Congenital central hypoventilation syndrome: an update. Pediatr Pulmonol 26:273–82

    PubMed  CAS  Google Scholar 

  • Hardart MKM, Burns JP, Truog RD (2002) Respiratory support in spinal muscular atrophy type I: a survey of physician practices and attitudes. Pediatr 110:e24

    Google Scholar 

  • Hein H, Rasche K, Wiebel M (2006) Empfehlungen zur Heimund Langzeitbeatmung. http://www.heimbeatmung.de/pdf/empfehlungJSB.pdf. Abgerufen 04.04.2012

  • Hodson ME, Madden BP, Steven MH, Tsang VT, Yacoub MH (1991) Non-invasive mechanical ventilation for cystic fi- brosis patients - a potential bridge to transplantation. Eur Respir J 4:524–7

    PubMed  CAS  Google Scholar 

  • loos C, Leclair-Richard D, Mrad S, Barois A, Estournet-Mathiaud B (2004) Respiratory capacity course in patients with infantile spinal muscular atrophy*. Chest 126:831–7

    Google Scholar 

  • Jablonka S, Rossoll W, Schrank B, Sendtner M (2000) The role of SMN in spinal muscular atrophy. J Neurol 247: 37–42

    Google Scholar 

  • Kohler M, Clarenbach CF, Boni L, Brack T, Russi EW, Bloch KE (2005) Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med 172:1032–6

    PubMed  Google Scholar 

  • Li KK, Riley RW, Guilleminault C (2000) An unreported risk in the use of home nasal continuous positive airway pres- sure and home nasal ventilation in children*. Chest 117;916–8

    PubMed  CAS  Google Scholar 

  • Lloyd-Owen SJ, Donaldson GC, Ambrosino N, Escarabill J, Farre R, Fauroux B et al. (2005) Patterns of home mechan- ical ventilation use in Europe: results from the Eurovent survey. Eur Respir J 25:1025–31

    PubMed  CAS  Google Scholar 

  • Manni R, Ottolini A, Cerveri I, Bruschi C, Zoia MC, Lanzi G et al. (1989) Breathing patterns and HbSaO 2 changes during nocturnal sleep in patients with Duchenne muscular dys- trophy. J Neurol 236:391–4

    PubMed  CAS  Google Scholar 

  • Mehta S, Hill NS (2001) Noninvasive ventilation. Am J Respir Crit Care Med 163:540–77

    PubMed  CAS  Google Scholar 

  • Mellies U, Dohna-Schwake C (2005) Intermittierende Selbstbeatmung in der Pädiatrie. In: Schönhofer B (Hrsg) Nichtinvasive Beatmung. Ecomed, Heidelberg

    Google Scholar 

  • Mellies U, Dohna-Schwake C, Voit T (2005) Respiratory func- tion assessment and intervention in neuromuscular disorders. Curr Opin Neurol 18:543–7

    PubMed  Google Scholar 

  • Mellies U, Ragette R, Schwake C, Boehm H, Voit T, Teschler H (2003) Daytime predictors of sleep disordered breathing in children and adolescents with neuromuscular disorders. Neuromuscul Disord 13:123–8

    PubMed  Google Scholar 

  • Narayanaswami P, Bertorini TE, Pourmand R, Horner LH (2000) Long-term tracheostomy ventilation in neuromuscular diseases: patient acceptance and quality of life. Neurore- habil Neural Repair 14:135–9

    CAS  Google Scholar 

  • Paditz E, Zieger S, Bickhardt J, Bockelbrink A, Grieben U, Hammer J et al. (2000) Lebensqualität unter Heimbeatmung im Kindes-, Jugend- und jungen Erwachsenenalter: unterschiedliche Sichtweisen von Eltern und Kindern. Som- nolog Schlafforsch Schlafmed 4:13–9

    Google Scholar 

  • Phillips L (1999) Growing pains. Aust Fam Physician 28:427-8

    PubMed  CAS  Google Scholar 

  • Ragette R, Mellies U, Schwake C, Voit T, Teschler H (2002) Pat- terns and predictors of sleep disordered breathing in primary myopathies. Thorax 57:724–8

    PubMed  CAS  Google Scholar 

  • Rideau Y, Jankowski LW, Grellet J (1981) Respiratory function in the muscular dystrophies. Muscle Nerve 4:155–64

    PubMed  CAS  Google Scholar 

  • Simonds AK (2004) Living and dying with respiratory failure: facilitating decision making. Chron Respirat Dis 1:56–9

    Google Scholar 

  • Simonds AK (2005) Ethical aspects of home long term ventilation in children with neuromuscular disease. Pediatr Res- pirat Revi 6:209–14

    Google Scholar 

  • Simonds AK (2006) Risk management of the home ventilator dependent patient. Thorax 61:369–71

    PubMed  CAS  Google Scholar 

  • Simonds AK, Muntoni F, Heather S, Fielding S (1998) Impact of nasal ventilation on survival in hypercapnic Duchenne muscular dystrophy. Thorax 53:949–52

    PubMed  CAS  Google Scholar 

  • Simonds AK, Ward S, Heather S, Bush A, Muntori F (2000) Out- come of paediatric domicilliary mask ventilation in neuromuscular and skeletal disease. Eur Resp J 16:476–81

    CAS  Google Scholar 

  • Sivasothy P, Brown L, Smith IE, Shneerson JM (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 56:438–44

    PubMed  CAS  Google Scholar 

  • Smith PEM, Calverley PMA, Edwards RHT (1988) Hypoxemia during sleep in Duchenne muscular dystrophy. Am J Respir Crit Care Med 137:884–8

    CAS  Google Scholar 

  • Tzeng A, Bach JR (2000) Preventing pulmonary morbidity for patients with neuromuscular disease. Chest 118:1390–6

    PubMed  CAS  Google Scholar 

  • Vianello A, Bevilacqua M, Salvador V, Cardaioli C, Vincenti E (1994) Long-term nasal intermittent positive pressure ventilation in advanced Duchenne's muscular dystrophy. Chest 105;445–8

    PubMed  CAS  Google Scholar 

  • Vianello A, Corrado A, Arcaro G, Gallan F, Ori C, Minuzzo M et al. (2005) Mechanical insufflation-exsufflation improves outcomes for neuromuscular disease patients with respiratory tract infections. Am J Phys Med Rehabil 84: 83–8

    PubMed  Google Scholar 

  • Villa MP, Pagani J, Ambrosio R, Ronchetti R, Bernkopf E (2002) Mid-face hypoplasia after long-term nasal ventilation. Am J Respir Crit Care Med 166:1142–3

    PubMed  Google Scholar 

  • Wallgren-Pettersson C, Bushby K, Mellies U, Simonds A (2004) 117th ENMC Workshop: Ventilatory support in congenital neuromuscular disorders: congenital myopathies, congenital muscular dystrophies, congenital myotonic dystrophy and SMA (II), 4th April 2003, Naarden, The Netherlands. Neuromuscul Disord 14:56–69

    PubMed  Google Scholar 

  • Windisch W, Walterspacher S, Siemon K, Geiseler J, Sitter H (2010) Guidelines for non-invasive and invasive mechanical ventilation for treatment of chronic respiratory failure. Published by the German Society for Pneumology (DGP). Pneumologie 64:640–52

    PubMed  CAS  Google Scholar 

  • Zerres K, Wirth B (1997) Spinal muscular atrophy - clinical and genetic correlations. Neuromuscul Disord 7:202–7

    PubMed  CAS  Google Scholar 

  • http://www.awmf.org/leitlinien/detail/ll/020-008.html. Abgerufen 02.03.2012

  • http://www.fsma.org/german/default.htm. Abgerufen 02.03.2012

Zu Abschn. 7.9

  • Chiu YK, Prendiville JS, Bennett SM, Montgomery CJ, Oberlander TF (1999) Pain management of junctional Epidermolysis bullosa in an 11-year-old boy. Pediatr Dermatol 16;465–8

    PubMed  CAS  Google Scholar 

  • Fine JD, Eady RAJ, Bauer EA, Bauer JW, Bruckner-Tuderman L, Heagerty A et al. (2008) The classification of inherited epidermolysis bullosa (EB): Report of the Third International Consensus Meeting on Diagnosis and Classification of EB. J Am Acad Dermatol 58:931–50

    PubMed  Google Scholar 

  • Fine JD, Johnson LB, Weiner M, Suchindran C (2004) Assess- ment of mobility, activities and pain in different subtypes of epidermolysis bullosa. Clinical dermatology 29:122–7

    Google Scholar 

  • Haynes L, Atherton D, Clayden G (1997) Constipation in Epidermolysis Bullosa: Successful Treatment with a Liquid Fiber-Containing Formula. Pediatr Dermatol 14:393–6

    PubMed  Google Scholar 

  • Herod J, Denyer J, Goldman A, Howard R (2002) Epidermolysis bullosa in children: pathophysiologie, anaesthesia and pain management. Paediatr Anaesth 12:388–97

    PubMed  Google Scholar 

  • Lin YC, Golianu B (2006) Anesthesia and pain management for pediatric patients with dystrophic epidermolysis bullosa. J Clin Anesth 18:268–71

    PubMed  Google Scholar 

Zu Abschn. 7.10

  • No Authors listed. (2000) Infektionsschutzgesetz. Gesetz zur Verhütung und Bekämpfung von Infektionskrankheiten beim Menschen (Infektionsschutzgesetz - IfSG). Bundesgesetzblatt 1, 1045

    Google Scholar 

  • Abad C, Fearday A, Safdar N (2010) Adverse effects of isolation in hospitalised patients: a systematic review. J Hosp Infect 76:97–102

    PubMed  CAS  Google Scholar 

  • Allegranzi B, Pittet D (2009) Role of hand hygiene in health- care-associated infection prevention. J Hosp Infect 73:305–15

    PubMed  CAS  Google Scholar 

  • Anderson RE, Young V, Stewart M, Robertson C, Dancer SJ (2011) Cleanliness audit of clinical surfaces and equip- ment: who cleans what? J Hosp Infect 78:178–81

    PubMed  CAS  Google Scholar 

  • Boyce JM (2011) Measuring healthcare worker hand hygiene activity: current practices and emerging technologies. Infect Control Hosp Epidemiol 32:1016–28

    PubMed  Google Scholar 

  • Boyce JM, Cooper T, Dolan MJ (2009) Evaluation of an electronic device for real-time measurement of alcoho-based hand rub use. Evaluation 30:1090–5

    Google Scholar 

  • Dancer SJ (2009) The role of environmental cleaning in the control of hospital-acquired infection. J Hosp Infect 73:378–85

    PubMed  CAS  Google Scholar 

  • Dancer SJ (2010) Control of transmission of infection in hospitals requires more than clean hands. Infect Control Hosp Epidemiol 31:958–60

    PubMed  Google Scholar 

  • Day HR, Perencevich EN, Harris AD, Himelhoch SS, Brown CH, Gruber-Baldini AL et al. (2011) Do contact precautions cause depression? A two-year study at a tertiary care medical centre. J Hosp Infect 79:103–4

    PubMed  CAS  Google Scholar 

  • Deutscher Bundestag. (2011) Amtliche Begründung zur Änderung des Infektionsschutzgesetzes. Drucksache 17: 12–22

    Google Scholar 

  • Dissemond J, Gerber V, Kramer A, Riepe G, Strohal R, Vasel- Biergans A et al. (2009) Praxisorientierte Expertenempfehlung zur Behandlung kritisch kolonisierter und lokal infizierter Wunden mit Polihexanid. Z Wundbehandlung 14;20–6

    Google Scholar 

  • Donskey CJ (2004) The role of the intestinal tract as a reservoir and source for transmission of nosocomial pathogens. Clin Infect Dis 39:219

    PubMed  Google Scholar 

  • Dumigan DG, Boyce JM, Havill NL, Golebiewski M, Balogun O, Rizvani R (2010) Who is really caring for your environment of care? Developing standardized cleaning procedures and effective monitoring techniques. Am J Infect Control 38:387–92

    PubMed  Google Scholar 

  • Dunford C, Cooper R, Molan P (2000) Using honey as a dress-ing for infected skin lesions. Nurs Times 96:7–9

    PubMed  CAS  Google Scholar 

  • Eichhorn A, Barth J, Christiansen B (2008) MRSA-Hygiene in der stationären Rehabilitation am Beispiel der onkologischen Rehabilitation - Ein Positionspapier [*] MRSA Hygiene in Inpatient Rehabilitation on the Example of Oncological Rehabilitation - A Position Paper. Rehabilitation (Stuttg) 47:184–90

    CAS  Google Scholar 

  • Erasmus V, Daha TJ, Brug H, Richardus JH, Behrendt MD, Vos MC et al. (2010) Systematic review of studies on compliance with hand hygiene guidelines in hospital care. Infect Control Hosp Epidemiol 31:283–94

    PubMed  Google Scholar 

  • Führer M (2011) Kinderpalliativmedizin. Monatsschr Kinder-heilkd 159:583–96

    Google Scholar 

  • Giannini MA, Nance D, McCullers JA (2009) Are toilet seats a vector for transmission of methicillin-resistant Staphylo- coccus aureus? Am J Infect Control 37(6):505–6

    PubMed  Google Scholar 

  • Gould DJ, Drey NS, Creedon S (2011) Routine hand hygiene audit by direct observation: has nemesis arrived? J Hosp Infect 77:293

    Google Scholar 

  • Hübner NO, Siebert J, Kramer A (2010) Octenidine dihydro- chloride, a modern antiseptic for skin, mucous mem- branes and wounds Skin harmacol Physiol 23:244–58

    Google Scholar 

  • Jones K, Banfield K, Weightman NC, Kerr KG (2011) Response to Anderson RE, Young V, Stewart M, Robertson C, Dancer »Cleanliness audit of clinical surfaces and equipment: who cleans what?«. J Hosp Infect 79:379–80

    PubMed  CAS  Google Scholar 

  • Kommission für Krankenhaushygiene und Infektionsprävention beim Robert-Koch-Institut (2002) Ausbruchsmanagement und strukturiertes Vorgehen bei gehäuftem Auftreten nosokomialer Infektionen. Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert Koch-Institut. Bundesgesundheitsbl. Gesundheitsforsch.Gesundheitsschutz 45:180–186

    Google Scholar 

  • Kommission für Krankenhaushygiene und Infektionsprävention beim Robert-Koch-Institut (2005) Infektionsprävention in Heimen - Empfehlung der Kommission für Kranken- haushygieneund Infektionsprävention beim Robert Koch-Institut. Bundesgesundheitsbl.Gesundheitsforsch. Gesundheitsschutz 48:1061–1080

    Google Scholar 

  • 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 August 2008, 363–364

    Google Scholar 

  • Kommission für Krankenhaushygiene und Infektionsprävention beim Robert-Koch-Institut (2009) Personelle und organisatorische Voraussetzungen zur Prävention noso- komialer Infektionen - Empfehlung der Kommission für Krankenhaushygiene und Infektionsprävention. Bundes- gesundheitsbl Gesundheitsforsch Gesundheitsschutz 53:951–952

    Google Scholar 

  • Kommission für Krankenhaushygiene und Infektionsprävention beim Robert-Koch-Institut (2011) Definition der Multiresistenz gegenüber Antibiotika bei gramnegativen Stäbchen im Hinblick auf Maßnahmen zur Vermeidung der Weiterverbreitung. Epidemiologisches Bulletin des Robert-Koch-Instituts , 337–339

    Google Scholar 

  • Kramer A, Christiansen B, Exner M, Rotter M (2000) Händehygiene. Mitteilung der Kommission für Krankenhaushygiene und Infektionsprävention am Robert-Koch-Institut. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz 43:230–3

    Google Scholar 

  • Kramer A, Schwebke I, Kampf G (2006) How long do nosoco- mial pathogens persist on inanimate surfaces? A system- atic review. BMC Infectious Diseases 6:130

    PubMed  Google Scholar 

  • Lund-Nielsen B, Adamsen L, Gottrup F, Rorth M, Tolver A, Kol-mos HJ (2011a) Qualitative bacteriology in malignant wounds. A prospective, randomized clinical study to compare the effect of honey and silver dressings. Osto- my-Wound Management 57:28

    Google Scholar 

  • Lund-Nielsen B, Adamsen L, Kolmos HJ, Rorth M, Tolver A, Gottrup F (2011b) The effect of honey-coated bandages com- pared with silver-coated bandages on treatment of malignant wounds - a randomized study. Wound Repair Regen 19:664–70

    Google Scholar 

  • Marra AR, Moura Jr DF, Oscar Fernando Pavilhäo dos Santos M, Edmond MB (2010) Measuring rates of hand hygiene ad- herence in the intensive care setting: a comparative study of direct observation, product usage, and electronic counting devices. Infect Control Hosp Epidemiol 31:796–801

    PubMed  Google Scholar 

  • Mohr Edokpolo C (2011) Multiresistente Erreger in Langzeitpflegeeinrichtungen. Hygiene und Medizin. Z angew Hyg Krankenh Praxis 36:81

    Google Scholar 

  • Nassauer A. (2011) Gibt es Bedenken gegen den Besuch von lediglich kolonisierten MRSA -Trägern in Kindergemeinschaftseinrichtungen? Epidemiologisches Bulletin des Robert-Koch-Instituts Berlin 17.Januar 2011, 9–13

    Google Scholar 

  • Pittet D, Panesar SS, Wilson K, Longtin Y, Morris T, Allan V et al. (2011) Involving the patient to ask about hospital hand hygiene: a national patient safety agency feasibility study. J Hosp Infect 77:299–303

    PubMed  CAS  Google Scholar 

  • Reichardt C, Eberlein-Gonska M, Schrappe M, Gastmeier P (2009) Clean Hands Campaign. No chance for hospital infections!. Unfallchirurg 112:679–82

    PubMed  CAS  Google Scholar 

  • Sahud AG, Bhanot N, Radhakrishnan A, Bajwa R, Manyam H, Post JC (2010) An electronic hand hygiene surveillance device: a pilot study exploring surrogate markers for hand hygiene compliance. Infect Control Hosp Epidemiol 31:634–9

    PubMed  Google Scholar 

  • Sax H, Allegranzi B, Larson E, Boyce J, Pittet D (2007) My five moments for hand hygiene': a user-centred design ap- proach to understand, train, monitor and report hand hygiene. J Hosp Infect 67:9–21

    PubMed  CAS  Google Scholar 

  • Scheithauer S, Eitner F, Mankartz J, Haefner H, Nowicki K, Floege J et al. (2012) Improving hand hygiene compliance rates in the haemodialysis setting: more than just more hand rubs. Nephrology Dialysis Transplant 27: 766–70

    Google Scholar 

  • Scheithauer S, Oude-Aost J, Heimann K, Haefner H, Schwanz T, Waitschies B et al. (2011) Hand hygiene in pediatric and neonatal intensive care unit patients: Daily opportunities and indication- and profession-specific analyses of compliance. Am J Infect Control 39(9):732–37

    PubMed  Google Scholar 

  • Simon A et al. (2011) Umgang mit haMRSA-kolonisierten Kindern und Jugendlichen im ambulanten Betreuungsumfeld. HygMed 36(1/2):30–35

    Google Scholar 

  • Simon A, Exner M, Engelhart S, Wischnewski N (2011) Praxisumgang mit ha-MRSA-kolonisierten Kindern und Jugendlichen im ambulanten Betreuungsumfeld. Hygiene Med 36:30–5

    Google Scholar 

  • Simon A, Exner M, Kramer A, Engelhart S (2009a) Implement- ing the MRSA recommendations made by the Commis- sion for Hospital Hygiene and Infection Prevention (KRINKO) of 1999 concurrent considerations by the DGKH Management Board. GMS Krankenhaushygiene Interdisziplinar 4:Doc02. Published online 2009

    Google Scholar 

  • Simon A, Müller A, Franz A, Bruns R, Günther G, von Müller L et al. (2009b) Erfassung nosokomialer und Gesundheits- system-assoziierter Infektionen in der Pädiatrie - Gemeinsame Stellungnahme zur Erfassung nosokomialer und gesundheitssystemassoziierter Infektionen in der Pädiatrie. Monatsschr Kinderheilkd 157:166–72

    Google Scholar 

  • Simon A, Sofka K, Wiszniewsky G, Blaser G, Bode U, Fleischhack G (2006) Wound care with antibacterial honey (Medi- honey) in pediatric hematology-oncology. Support Care Cancer 14:91–7

    PubMed  Google Scholar 

  • Simon A, Traynor K, Santos K, Blaser G, Bode U, Molan P (2009c) Medical honey for wound care - Still the «latest resort!? Evid Based Complement Alternat Med 6:165–73

    Google Scholar 

  • Thomas BW, Berg-Copas GM, Vasquez DG, Jackson BL, Wetta-Hall R (2009) Conspicuous vs customary location of hand hygiene agent dispensers on alcohol-based hand hygiene product usage in an intensive care unit. JAOA: Journal of the American Osteopathic Association 109:263–7

    PubMed  Google Scholar 

  • Wissenschaftlicher Beirat der »Aktion saubere Hände!« (2011) Positionspapier zur Einreibemethode der Händedesinfektion. http://www.aktion-sauberehaende.de/down-loads/pdf/ASH_Positionspapier_Einreibemethode_30092011 pdf. Abgerufen 07.05.2012

  • http://www.hygiene-tipps-fuer-kids.de. Abgerufen 07.05.2012

Zu Abschn. 7.11

  • Association for Children with Life-threatening or Terminal Conditions and their Families (ACT), the National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) and the Scottish Partnership Agency for Palliative and Cancer Care (SPAPCC) (2001). Palliative care for young people aged 13-24. Bristol, London, Edinburgh UK: ACT, NCHSPCS, SPAPCC

    Google Scholar 

  • Bluebond-Langner M (1996) In the Shadow of illness. Prince-ton University Press, Princeton New York

    Google Scholar 

  • Doug M, Adi Y, Williams J, Paul M, Kelly D, Petchey R et al. (2011) Transition to adult services for children and young people with palliative care needs: a systematic review. Arch Dis Child 96:78–84

    PubMed  CAS  Google Scholar 

  • http://www.vah-online.de. Abgerufen 10.03.2012

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    Prof. Dr. med. Boris Zernikow

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    Boris Zernikow

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Zernikow, B. (2013). Besonderheiten der pädiatrischen Palliativversorgung bei besonderen Patientengruppen. In: Zernikow, B. (eds) Palliativversorgung von Kindern, Jugendlichen und jungen Erwachsenen. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-29610-9_7

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