Skip to main content
Erschienen in:

23.07.2022 | Review

Multidisciplinary spina bifida clinic: the Chicago experience

verfasst von: Nathan A. Shlobin, Elizabeth B. Yerkes, Vineeta T. Swaroop, Sandi Lam, David G. McLone, Robin M. Bowman

Erschienen in: Child's Nervous System | Ausgabe 9/2022

Einloggen, um Zugang zu erhalten

Abstract

Open spina bifida (open SB) is the most complex congenital abnormality of the central nervous system compatible with long-term survival. Multidisciplinary care is required to address the effect of this disease on the neurological, musculoskeletal, genitourinary, and gastrointestinal systems, as well as the complex psychosocial impact on the developing child. Individuals with SB benefit from the involvement of neurosurgeons, orthopedic surgeons, urologists, physical medicine and rehabilitation specialists, pediatricians, psychologists, physical/occupational/speech therapists, social workers, nurse coordinators, and other personnel. Multidisciplinary clinics are the gold standard for coordinated, optimal medical and surgical care. Ann and Robert H. Lurie Children’s Hospital, formerly known as Children’s Memorial Hospital, was one of the first hospitals in the USA to manage patients with this complex disease in a multidisciplinary manner. We describe the longitudinal experience of the multidisciplinary Spina Bifida Center at our institution and highlight the advances that have arisen from this care model over time. This clinic serves as an exemplar of organized, effective, and patient-centered approach to the comprehensive care of people living with open SB.
Literatur
1.
Zurück zum Zitat Atta CA, Fiest KM, Frolkis AD, Jette N, Pringsheim T, St Germaine-Smith C, Rajapakse T, Kaplan GG, Metcalfe A (2016) Global birth prevalence of spina bifida by folic acid fortification status: a systematic review and meta-analysis. Am J Public Health 106:e24–e34PubMedPubMedCentralCrossRef Atta CA, Fiest KM, Frolkis AD, Jette N, Pringsheim T, St Germaine-Smith C, Rajapakse T, Kaplan GG, Metcalfe A (2016) Global birth prevalence of spina bifida by folic acid fortification status: a systematic review and meta-analysis. Am J Public Health 106:e24–e34PubMedPubMedCentralCrossRef
2.
Zurück zum Zitat Forrester MB, Merz RD (2003) First-year mortality rates for selected birth defects, Hawaii, 1986–1999. Am J Med Genet A 119:311–318CrossRef Forrester MB, Merz RD (2003) First-year mortality rates for selected birth defects, Hawaii, 1986–1999. Am J Med Genet A 119:311–318CrossRef
3.
Zurück zum Zitat Parker SE, Mai CT, Canfield MA, Rickard R, Wang Y, Meyer RE, Anderson P, Mason CA, Collins JS, Kirby RS (2010) Updated national birth prevalence estimates for selected birth defects in the United States, 2004–2006. Birth Defects Res A 88:1008–1016CrossRef Parker SE, Mai CT, Canfield MA, Rickard R, Wang Y, Meyer RE, Anderson P, Mason CA, Collins JS, Kirby RS (2010) Updated national birth prevalence estimates for selected birth defects in the United States, 2004–2006. Birth Defects Res A 88:1008–1016CrossRef
4.
Zurück zum Zitat Mitchell LE, Adzick NS, Melchionne J, Pasquariello PS, Sutton LN, Whitehead AS (2004) Spina bifida. The Lancet 364:1885–1895CrossRef Mitchell LE, Adzick NS, Melchionne J, Pasquariello PS, Sutton LN, Whitehead AS (2004) Spina bifida. The Lancet 364:1885–1895CrossRef
5.
Zurück zum Zitat Kancherla V, Wagh K, Pachón H, Oakley GP Jr (2021) A 2019 global update on folic acid-preventable spina bifida and anencephaly. Birth Defects Research 113:77–89PubMedCrossRef Kancherla V, Wagh K, Pachón H, Oakley GP Jr (2021) A 2019 global update on folic acid-preventable spina bifida and anencephaly. Birth Defects Research 113:77–89PubMedCrossRef
6.
Zurück zum Zitat Sadler T (2005) Embryology of neural tube development. Am J Med Genet C Semin Med Genet 1. Wiley Online Library, pp 2–8 Sadler T (2005) Embryology of neural tube development. Am J Med Genet C Semin Med Genet 1. Wiley Online Library, pp 2–8
7.
Zurück zum Zitat Daly S, Mills JL, Molloy AM, Conley M, Lee YJ, Kirke PN, Weir DG, Scott JM (1997) Minimum effective dose of folic acid for food fortification to prevent neural-tube defects. The Lancet 350:1666–1669CrossRef Daly S, Mills JL, Molloy AM, Conley M, Lee YJ, Kirke PN, Weir DG, Scott JM (1997) Minimum effective dose of folic acid for food fortification to prevent neural-tube defects. The Lancet 350:1666–1669CrossRef
8.
Zurück zum Zitat Group MVSR (1991) Prevention of neural tube defects: results of the Medical Research Council Vitamin Study. The lancet 338:131–137CrossRef Group MVSR (1991) Prevention of neural tube defects: results of the Medical Research Council Vitamin Study. The lancet 338:131–137CrossRef
9.
Zurück zum Zitat Shlobin NA, Kanmounye US, Ozair A, de Koning R, Zolo Y, Zivkovic I, Niquen-Jimenez M, Affana CK, Jogo L, Abongha GB (2021) Educating the next generation of global neurosurgeons: competencies, skills, and resources for medical students interested in global neurosurgery. World Neurosurgery 155:150–159PubMedCrossRef Shlobin NA, Kanmounye US, Ozair A, de Koning R, Zolo Y, Zivkovic I, Niquen-Jimenez M, Affana CK, Jogo L, Abongha GB (2021) Educating the next generation of global neurosurgeons: competencies, skills, and resources for medical students interested in global neurosurgery. World Neurosurgery 155:150–159PubMedCrossRef
10.
Zurück zum Zitat Shlobin NA, LoPresti MA, Du RY, Lam S (2020) Folate fortification and supplementation in prevention of folate-sensitive neural tube defects: a systematic review of policy. J Neurosurg Pediatr 27:294–310PubMedCrossRef Shlobin NA, LoPresti MA, Du RY, Lam S (2020) Folate fortification and supplementation in prevention of folate-sensitive neural tube defects: a systematic review of policy. J Neurosurg Pediatr 27:294–310PubMedCrossRef
11.
Zurück zum Zitat Copp AJ, Adzick NS, Chitty LS, Fletcher JM, Holmbeck GN, Shaw GM (2015) Spina bifida Nature reviews Disease primers 1:1–18 Copp AJ, Adzick NS, Chitty LS, Fletcher JM, Holmbeck GN, Shaw GM (2015) Spina bifida Nature reviews Disease primers 1:1–18
12.
Zurück zum Zitat Gadson A, Akpovi E, Mehta PK (2017) Exploring the social determinants of racial/ethnic disparities in prenatal care utilization and maternal outcome. In: Seminars in perinatology 5(Elsevier):308–317 Gadson A, Akpovi E, Mehta PK (2017) Exploring the social determinants of racial/ethnic disparities in prenatal care utilization and maternal outcome. In: Seminars in perinatology 5(Elsevier):308–317
13.
Zurück zum Zitat Healy AJ, Malone FD, Sullivan LM, Porter TF, Luthy DA, Comstock CH, Saade G, Berkowitz R, Klugman S, Dugoff L (2006) Early access to prenatal care: implications for racial disparity in perinatal mortality. Obstet Gynecol 107:625–631PubMedCrossRef Healy AJ, Malone FD, Sullivan LM, Porter TF, Luthy DA, Comstock CH, Saade G, Berkowitz R, Klugman S, Dugoff L (2006) Early access to prenatal care: implications for racial disparity in perinatal mortality. Obstet Gynecol 107:625–631PubMedCrossRef
14.
Zurück zum Zitat Williams J, Mai CT, Mulinare J, Isenburg J, Flood TJ, Ethen M, Frohnert B, Kirby RS (2015) Updated estimates of neural tube defects prevented by mandatory folic acid fortification—United States, 1995–2011. MMWR Morb Mortal Wkly Rep 64:1PubMedPubMedCentral Williams J, Mai CT, Mulinare J, Isenburg J, Flood TJ, Ethen M, Frohnert B, Kirby RS (2015) Updated estimates of neural tube defects prevented by mandatory folic acid fortification—United States, 1995–2011. MMWR Morb Mortal Wkly Rep 64:1PubMedPubMedCentral
15.
Zurück zum Zitat Wong LYC, Paulozzi LJ (2001) Survival of infants with spina bifida: a population study, 1979–94. Paediatr Perinat Epidemiol 15:374–378PubMedCrossRef Wong LYC, Paulozzi LJ (2001) Survival of infants with spina bifida: a population study, 1979–94. Paediatr Perinat Epidemiol 15:374–378PubMedCrossRef
16.
Zurück zum Zitat Oakeshott P, Hunt GM, Poulton A, Reid F (2010) Expectation of life and unexpected death in open spina bifida: a 40-year complete, non-selective, longitudinal cohort study. Dev Med Child Neurol 52:749–753PubMedCrossRef Oakeshott P, Hunt GM, Poulton A, Reid F (2010) Expectation of life and unexpected death in open spina bifida: a 40-year complete, non-selective, longitudinal cohort study. Dev Med Child Neurol 52:749–753PubMedCrossRef
17.
Zurück zum Zitat Bakaniene I, Prasauskiene A, Vaiciene‐Magistris N (2016) Health‐related quality of life in children with myelomeningocele: a systematic review of the literature. Child: Care Health Dev 42:625–643 Bakaniene I, Prasauskiene A, Vaiciene‐Magistris N (2016) Health‐related quality of life in children with myelomeningocele: a systematic review of the literature. Child: Care Health Dev 42:625–643
19.
Zurück zum Zitat Kinsman S, Levey E, Ruffing V, Stone J, Warren L (2000) Beyond multidisciplinary care: a new conceptual model for spina bifida services. Eur J Pediatr Surg 10:35–38PubMedCrossRef Kinsman S, Levey E, Ruffing V, Stone J, Warren L (2000) Beyond multidisciplinary care: a new conceptual model for spina bifida services. Eur J Pediatr Surg 10:35–38PubMedCrossRef
20.
Zurück zum Zitat Nonaka M, Isozaki H, Komori Y, Kamei T, Takeda J, Nonaka Y, Yabe I, Zaitsu M, Nakashima K, Asai A (2022) Number of surgeries performed during the lifetime of patients with myelomeningocele. J Neurosurg Pediatr 1:1–9 Nonaka M, Isozaki H, Komori Y, Kamei T, Takeda J, Nonaka Y, Yabe I, Zaitsu M, Nakashima K, Asai A (2022) Number of surgeries performed during the lifetime of patients with myelomeningocele. J Neurosurg Pediatr 1:1–9
21.
Zurück zum Zitat Thibadeau J, Walker WO Jr, Castillo J, Dicianno BE, Routh JC, Smith KA, Ouyang L (2020) Philosophy of care delivery for spina bifida. Disabil Health J 13:100883PubMedCrossRef Thibadeau J, Walker WO Jr, Castillo J, Dicianno BE, Routh JC, Smith KA, Ouyang L (2020) Philosophy of care delivery for spina bifida. Disabil Health J 13:100883PubMedCrossRef
22.
Zurück zum Zitat Laurence K (1974) Effect of early surgery for spina bifida cystica on survival and quality of life. Lancet (London, England) 1:301–304CrossRef Laurence K (1974) Effect of early surgery for spina bifida cystica on survival and quality of life. Lancet (London, England) 1:301–304CrossRef
23.
Zurück zum Zitat Leck I (1966) Changes in the incidence of neural-tube defects. The Lancet 288:791–793CrossRef Leck I (1966) Changes in the incidence of neural-tube defects. The Lancet 288:791–793CrossRef
24.
Zurück zum Zitat Baru JS, Bloom DA, Muraszko K, Koop EC (2001) John Holter’s shunt. J Am Coll Surg 192:79–85PubMedCrossRef Baru JS, Bloom DA, Muraszko K, Koop EC (2001) John Holter’s shunt. J Am Coll Surg 192:79–85PubMedCrossRef
26.
Zurück zum Zitat Lorber J (1974) Selective treatment of myelomeningocele: to treat or not to treat? Pediatrics 53:307–308PubMedCrossRef Lorber J (1974) Selective treatment of myelomeningocele: to treat or not to treat? Pediatrics 53:307–308PubMedCrossRef
28.
Zurück zum Zitat Blount JP, Bowman R, Dias MS, Hopson B, Partington MD, Rocque BG (2020) Neurosurgery guidelines for the care of people with spina bifida. Journal of pediatric rehabilitation medicine 13:467–477PubMedPubMedCentralCrossRef Blount JP, Bowman R, Dias MS, Hopson B, Partington MD, Rocque BG (2020) Neurosurgery guidelines for the care of people with spina bifida. Journal of pediatric rehabilitation medicine 13:467–477PubMedPubMedCentralCrossRef
31.
Zurück zum Zitat Johnson PR (1981) Selective nontreatment and spina bifida: a case study in ethical theory and application. Bioethics Q 3:91–111PubMedCrossRef Johnson PR (1981) Selective nontreatment and spina bifida: a case study in ethical theory and application. Bioethics Q 3:91–111PubMedCrossRef
32.
Zurück zum Zitat Özek MM, Cinalli G, Maixner WJ, Maixner W (2008) Spina bifida: management and outcome. Springer Özek MM, Cinalli G, Maixner WJ, Maixner W (2008) Spina bifida: management and outcome. Springer
33.
Zurück zum Zitat Lorber J (1975) Ethical problems in the management of myelomeningocele and hydrocephalus: the Milroy Lecture, 1975. J R Coll Physicians Lond 10:47PubMedPubMedCentral Lorber J (1975) Ethical problems in the management of myelomeningocele and hydrocephalus: the Milroy Lecture, 1975. J R Coll Physicians Lond 10:47PubMedPubMedCentral
34.
Zurück zum Zitat Lorber J (1978) Spina bifida: to treat or not to treat? Selection-the best policy available. Nurs Mirror 147:14–17PubMed Lorber J (1978) Spina bifida: to treat or not to treat? Selection-the best policy available. Nurs Mirror 147:14–17PubMed
35.
Zurück zum Zitat Guiney EJ, MacCarthy P (1981) Implications of a selective policy in the management of spina bifida. J Pediatr Surg 16:136–138PubMedCrossRef Guiney EJ, MacCarthy P (1981) Implications of a selective policy in the management of spina bifida. J Pediatr Surg 16:136–138PubMedCrossRef
36.
Zurück zum Zitat Liptak GS, El Samra A (2010) Optimizing health care for children with spina bifida. Dev Disabil Res Rev 16:66–75PubMedCrossRef Liptak GS, El Samra A (2010) Optimizing health care for children with spina bifida. Dev Disabil Res Rev 16:66–75PubMedCrossRef
37.
Zurück zum Zitat Alford EN, Hopson BD, Safyanov F, Arynchyna A, Bollo RJ, Hankinson TC, Rocque BG, Blount JP (2019) Care management and contemporary challenges in spina bifida: a practice preference survey of the American Society of Pediatric Neurosurgeons. J Neurosurg Pediatr 24:539–548CrossRef Alford EN, Hopson BD, Safyanov F, Arynchyna A, Bollo RJ, Hankinson TC, Rocque BG, Blount JP (2019) Care management and contemporary challenges in spina bifida: a practice preference survey of the American Society of Pediatric Neurosurgeons. J Neurosurg Pediatr 24:539–548CrossRef
38.
Zurück zum Zitat Engelhard HH, Grant J, Ciric IS, Wetzel NC, Batjer HH (1998) The history of neurological surgery at Northwestern University. Neurosurgery 43:914–925PubMedCrossRef Engelhard HH, Grant J, Ciric IS, Wetzel NC, Batjer HH (1998) The history of neurological surgery at Northwestern University. Neurosurgery 43:914–925PubMedCrossRef
39.
Zurück zum Zitat Bowman RM, Mohan A, Ito J, Seibly JM, McLone DG (2009) Tethered cord release: a long-term study in 114 patients. J Neurosurg Pediatr 3:181–187PubMedCrossRef Bowman RM, Mohan A, Ito J, Seibly JM, McLone DG (2009) Tethered cord release: a long-term study in 114 patients. J Neurosurg Pediatr 3:181–187PubMedCrossRef
40.
Zurück zum Zitat McLone DG (1998) Care of the neonate with a myelomeningocele. Neurosurg Clin N Am 9:111–120PubMedCrossRef McLone DG (1998) Care of the neonate with a myelomeningocele. Neurosurg Clin N Am 9:111–120PubMedCrossRef
41.
Zurück zum Zitat Soare PL, Raimondi AJ (1977) Intellectual and perceptual-motor characteristics of treated myelomeningocele children. Am J Dis Child 131:199–204PubMed Soare PL, Raimondi AJ (1977) Intellectual and perceptual-motor characteristics of treated myelomeningocele children. Am J Dis Child 131:199–204PubMed
42.
Zurück zum Zitat McLone DG (1980) Technique for closure of myelomeningocele. Pediatr Neurosurg 6:65–73CrossRef McLone DG (1980) Technique for closure of myelomeningocele. Pediatr Neurosurg 6:65–73CrossRef
43.
Zurück zum Zitat McLone D, Raimondi A, Sommers M (1981) The results of early treatment of 100 consecutive newborns with myelomeningocele. Z Kinderchir 34:115–117 McLone D, Raimondi A, Sommers M (1981) The results of early treatment of 100 consecutive newborns with myelomeningocele. Z Kinderchir 34:115–117
44.
Zurück zum Zitat Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA (2001) Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg 34:114–120PubMedCrossRef Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA (2001) Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg 34:114–120PubMedCrossRef
45.
Zurück zum Zitat Adzick NS, Thom EA, Spong CY, Brock JW III, Burrows PK, Johnson MP, Howell LJ, Farrell JA, Dabrowiak ME, Sutton LN (2011) A randomized trial of prenatal versus postnatal repair of myelomeningocele. N Engl J Med 364:993–1004PubMedPubMedCentralCrossRef Adzick NS, Thom EA, Spong CY, Brock JW III, Burrows PK, Johnson MP, Howell LJ, Farrell JA, Dabrowiak ME, Sutton LN (2011) A randomized trial of prenatal versus postnatal repair of myelomeningocele. N Engl J Med 364:993–1004PubMedPubMedCentralCrossRef
46.
Zurück zum Zitat Goodnight WH, Bahtiyar O, Bennett KA, Emery SP, Lillegard J, Fisher A, Goldstein R, Jatres J, Lim F-Y, McCullough L (2019) Subsequent pregnancy outcomes after open maternal-fetal surgery for myelomeningocele. Am J Obstet Gynecol 220(494):e491–494. e497 Goodnight WH, Bahtiyar O, Bennett KA, Emery SP, Lillegard J, Fisher A, Goldstein R, Jatres J, Lim F-Y, McCullough L (2019) Subsequent pregnancy outcomes after open maternal-fetal surgery for myelomeningocele. Am J Obstet Gynecol 220(494):e491–494. e497
47.
Zurück zum Zitat McLone DG, Naidich TP (1985) Terminal myelocystocele. Neurosurgery 16:36–43PubMed McLone DG, Naidich TP (1985) Terminal myelocystocele. Neurosurgery 16:36–43PubMed
48.
Zurück zum Zitat Wiener JS, Suson KD, Castillo J, Routh JC, Tanaka ST, Liu T, Ward EA, Thibadeau JK, Joseph DB, Registry NSBP (2018) Bladder management and continence outcomes in adults with spina bifida: results from the National Spina Bifida Patient Registry, 2009 to 2015. J Urol 200:187–194PubMedPubMedCentralCrossRef Wiener JS, Suson KD, Castillo J, Routh JC, Tanaka ST, Liu T, Ward EA, Thibadeau JK, Joseph DB, Registry NSBP (2018) Bladder management and continence outcomes in adults with spina bifida: results from the National Spina Bifida Patient Registry, 2009 to 2015. J Urol 200:187–194PubMedPubMedCentralCrossRef
49.
Zurück zum Zitat Bowman RM, Boshnjaku V, McLone DG (2009) The changing incidence of myelomeningocele and its impact on pediatric neurosurgery: a review from the Children’s Memorial Hospital. Child’s Nervous System 25:801–806PubMedCrossRef Bowman RM, Boshnjaku V, McLone DG (2009) The changing incidence of myelomeningocele and its impact on pediatric neurosurgery: a review from the Children’s Memorial Hospital. Child’s Nervous System 25:801–806PubMedCrossRef
50.
Zurück zum Zitat Norkett W, McLone DG, Bowman R (2016) Current management strategies of hydrocephalus in the child with open spina bifida. Topics in spinal cord injury rehabilitation 22:241–246PubMedPubMedCentralCrossRef Norkett W, McLone DG, Bowman R (2016) Current management strategies of hydrocephalus in the child with open spina bifida. Topics in spinal cord injury rehabilitation 22:241–246PubMedPubMedCentralCrossRef
51.
Zurück zum Zitat Chakraborty A, Crimmins D, Hayward R, Thompson D (2008) Toward reducing shunt placement rates in patients with myelomeningocele. J Neurosurg Pediatr 1:361–365PubMedCrossRef Chakraborty A, Crimmins D, Hayward R, Thompson D (2008) Toward reducing shunt placement rates in patients with myelomeningocele. J Neurosurg Pediatr 1:361–365PubMedCrossRef
52.
Zurück zum Zitat McLone DG, Herman JM, Gabrieli AP, Dias L (1990) Tethered cord as a cause of scoliosis in children with a myelomeningocele. Pediatr Neurosurg 16:8–13PubMedCrossRef McLone DG, Herman JM, Gabrieli AP, Dias L (1990) Tethered cord as a cause of scoliosis in children with a myelomeningocele. Pediatr Neurosurg 16:8–13PubMedCrossRef
53.
Zurück zum Zitat Sarwark JF, Weber DT, Gabrieli AP, McLone DG, Dias L (1996) Tethered cord syndrome in low motor level children with myelomeningocele. Pediatr Neurosurg 25:295–301PubMedCrossRef Sarwark JF, Weber DT, Gabrieli AP, McLone DG, Dias L (1996) Tethered cord syndrome in low motor level children with myelomeningocele. Pediatr Neurosurg 25:295–301PubMedCrossRef
54.
Zurück zum Zitat Fernbach S, McLone D (1985) Derangement of swallowing in children with myelomeningocele. Pediatr Radiol 15:311–314PubMedCrossRef Fernbach S, McLone D (1985) Derangement of swallowing in children with myelomeningocele. Pediatr Radiol 15:311–314PubMedCrossRef
55.
Zurück zum Zitat Tomita T, McLone DG (1983) Acute respiratory arrest: a complication of malformation of the shunt in children with myelomeningocele and Arnold-Chiari malformation. Am J Dis Child 137:142–144PubMedCrossRef Tomita T, McLone DG (1983) Acute respiratory arrest: a complication of malformation of the shunt in children with myelomeningocele and Arnold-Chiari malformation. Am J Dis Child 137:142–144PubMedCrossRef
56.
Zurück zum Zitat McLone DG, Dias MS (2003) The Chiari II malformation: cause and impact. Childs Nerv Syst 19:540–550PubMedCrossRef McLone DG, Dias MS (2003) The Chiari II malformation: cause and impact. Childs Nerv Syst 19:540–550PubMedCrossRef
57.
Zurück zum Zitat Patel SK, Staarmann B, Heilman A, Mains A, Woodward J, Bierbrauer KS (2019) Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood. Neurosurg Focus 47:E16PubMedCrossRef Patel SK, Staarmann B, Heilman A, Mains A, Woodward J, Bierbrauer KS (2019) Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood. Neurosurg Focus 47:E16PubMedCrossRef
58.
Zurück zum Zitat Bartonek Å, Saraste H (2001) Factors influencing ambulation in myelomeningocele: a cross-sectional study. Dev Med Child Neurol 43:253–260PubMedCrossRef Bartonek Å, Saraste H (2001) Factors influencing ambulation in myelomeningocele: a cross-sectional study. Dev Med Child Neurol 43:253–260PubMedCrossRef
59.
Zurück zum Zitat Streur CS, Schafer CL, Garcia VP, Wittmann DA (2018) “I don’t know what I’m doing… I hope I’m not just an idiot”: the need to train pediatric urologists to discuss sexual and reproductive health care with young women with spina bifida. J Sex Med 15:1403–1413PubMedPubMedCentralCrossRef Streur CS, Schafer CL, Garcia VP, Wittmann DA (2018) “I don’t know what I’m doing… I hope I’m not just an idiot”: the need to train pediatric urologists to discuss sexual and reproductive health care with young women with spina bifida. J Sex Med 15:1403–1413PubMedPubMedCentralCrossRef
60.
Zurück zum Zitat Webb TS (2010) Optimizing health care for adults with spina bifida. Dev Disabil Res Rev 16:76–81PubMedCrossRef Webb TS (2010) Optimizing health care for adults with spina bifida. Dev Disabil Res Rev 16:76–81PubMedCrossRef
61.
Zurück zum Zitat Hopson B, Alford EN, Zimmerman K, Blount JP, Rocque BG (2019) Development of an evidence-based individualized transition plan for spina bifida. Neurosurg Focus 47:E17PubMedCrossRef Hopson B, Alford EN, Zimmerman K, Blount JP, Rocque BG (2019) Development of an evidence-based individualized transition plan for spina bifida. Neurosurg Focus 47:E17PubMedCrossRef
62.
Zurück zum Zitat Rague JT, Kim S, Hirsch JA, Meyer T, Rosoklija I, Larson JE, Swaroop VT, Bowman RM, Bowen DK, Cheng EY (2021) Assessment of health literacy and self-reported readiness for transition to adult care among adolescents and young adults with spina bifida. JAMA Netw Open 4:e2127034–e2127034PubMedPubMedCentralCrossRef Rague JT, Kim S, Hirsch JA, Meyer T, Rosoklija I, Larson JE, Swaroop VT, Bowman RM, Bowen DK, Cheng EY (2021) Assessment of health literacy and self-reported readiness for transition to adult care among adolescents and young adults with spina bifida. JAMA Netw Open 4:e2127034–e2127034PubMedPubMedCentralCrossRef
63.
Zurück zum Zitat Behbahani M, Shlobin N, Rosen C, Yerkes E, Swaroop V, Lam S, Bowman R (2020) Multidisciplinary management of tethered spinal cord syndrome in children: operationalizing an outpatient patient-centered workflow. J Multidiscip Healthc 13:1283PubMedPubMedCentralCrossRef Behbahani M, Shlobin N, Rosen C, Yerkes E, Swaroop V, Lam S, Bowman R (2020) Multidisciplinary management of tethered spinal cord syndrome in children: operationalizing an outpatient patient-centered workflow. J Multidiscip Healthc 13:1283PubMedPubMedCentralCrossRef
64.
Zurück zum Zitat Behbahani M, Shlobin NA, Dziugan K, Callas H, Meyer T, Yerkes E, Swaroop VT, DeCuypere M, Lam S, McLone D (2022) Surgical management of myelocystocele: a single-center experience with long-term functional outcomes. J Neurosurg Pediatr 1:1–9 Behbahani M, Shlobin NA, Dziugan K, Callas H, Meyer T, Yerkes E, Swaroop VT, DeCuypere M, Lam S, McLone D (2022) Surgical management of myelocystocele: a single-center experience with long-term functional outcomes. J Neurosurg Pediatr 1:1–9
65.
Zurück zum Zitat Brown J, McLone D (1981) The effect of complications on intellectual function in 167 children with myelomeningocele. Z Kinderchir 34:117–121 Brown J, McLone D (1981) The effect of complications on intellectual function in 167 children with myelomeningocele. Z Kinderchir 34:117–121
66.
Zurück zum Zitat Byrne RW, Hayes EA, George TM, McLone DG (1995) Operative resection of 100 spinal lipomas in infants less than 1 year of age. Pediatr Neurosurg 23:182–187PubMedCrossRef Byrne RW, Hayes EA, George TM, McLone DG (1995) Operative resection of 100 spinal lipomas in infants less than 1 year of age. Pediatr Neurosurg 23:182–187PubMedCrossRef
67.
Zurück zum Zitat Herman JM, McLone DG, Storrs BB, Dauser RC (1993) Analysis of 153 patients with myelomeningocele or spinal lipoma reoperated upon for a tethered cord. Pediatr Neurosurg 19:243–249PubMedCrossRef Herman JM, McLone DG, Storrs BB, Dauser RC (1993) Analysis of 153 patients with myelomeningocele or spinal lipoma reoperated upon for a tethered cord. Pediatr Neurosurg 19:243–249PubMedCrossRef
68.
Zurück zum Zitat Lavigne JV, Nolan D, McLone DG (1988) Temperament, coping, and psychological adjustment in young children with myelomeningocele. J Pediatr Psychol 13:363–378PubMedCrossRef Lavigne JV, Nolan D, McLone DG (1988) Temperament, coping, and psychological adjustment in young children with myelomeningocele. J Pediatr Psychol 13:363–378PubMedCrossRef
69.
Zurück zum Zitat McLone DG, Czyzewski D, Raimondi AJ, Sommers RC (1982) Central nervous system infections as a limiting factor in the intelligence of children with myelomeningocele. Pediatrics 70:338–342CrossRef McLone DG, Czyzewski D, Raimondi AJ, Sommers RC (1982) Central nervous system infections as a limiting factor in the intelligence of children with myelomeningocele. Pediatrics 70:338–342CrossRef
70.
Zurück zum Zitat Nye JS, Balkin N, Lucas H, Knepper PA, McLone DG, Charrow J (1998) Myelomeningocele and Waardenburg syndrome (type 3) in patients with interstitial deletions of 2q35 and the PAX3 gene: possible digenic inheritance of a neural tube defect. Am J Med Genet 75:401–408PubMedCrossRef Nye JS, Balkin N, Lucas H, Knepper PA, McLone DG, Charrow J (1998) Myelomeningocele and Waardenburg syndrome (type 3) in patients with interstitial deletions of 2q35 and the PAX3 gene: possible digenic inheritance of a neural tube defect. Am J Med Genet 75:401–408PubMedCrossRef
71.
Zurück zum Zitat Raimondi AJ, Robinson JS, Kuwamura K (1977) Complications of ventriculo-peritoneal shunting and a critical comparison of the three-piece and one-piece systems. Pediatr Neurosurg 3:321–342CrossRef Raimondi AJ, Robinson JS, Kuwamura K (1977) Complications of ventriculo-peritoneal shunting and a critical comparison of the three-piece and one-piece systems. Pediatr Neurosurg 3:321–342CrossRef
72.
Zurück zum Zitat Tsurubuchi T, Ichi S, Shim K-w, Norkett W, Allender E, Mania-Farnell B, Tomita T, McLone DG, Ginsberg N, Mayanil CS (2013) Amniotic fluid and serum biomarkers from women with neural tube defect–affected pregnancies: a case study for myelomeningocele and anencephaly. J Neurosurg Pediatr 12:380–389PubMedCrossRef Tsurubuchi T, Ichi S, Shim K-w, Norkett W, Allender E, Mania-Farnell B, Tomita T, McLone DG, Ginsberg N, Mayanil CS (2013) Amniotic fluid and serum biomarkers from women with neural tube defect–affected pregnancies: a case study for myelomeningocele and anencephaly. J Neurosurg Pediatr 12:380–389PubMedCrossRef
73.
Zurück zum Zitat Wills KE, Holmbeck GN, Dillon K, McLone DG (1990) Intelligence and achievement in children with myelomeningocele. J Pediatr Psychol 15:161–176PubMedCrossRef Wills KE, Holmbeck GN, Dillon K, McLone DG (1990) Intelligence and achievement in children with myelomeningocele. J Pediatr Psychol 15:161–176PubMedCrossRef
74.
Zurück zum Zitat Yerkes E, Halline C, Yoshiba G, Meyer T, Rosoklija I, Bowman R, McLone D, Cheng E (2017) Lipomyelomeningocele for the urologist: should we view it the same as myelomeningocele? J Pediatr Urol 13(371):e371–371. e378 Yerkes E, Halline C, Yoshiba G, Meyer T, Rosoklija I, Bowman R, McLone D, Cheng E (2017) Lipomyelomeningocele for the urologist: should we view it the same as myelomeningocele? J Pediatr Urol 13(371):e371–371. e378
76.
Zurück zum Zitat Dias MS, Wang M, Rizk EB, Bowman R, Partington MD, Blount JP, Rocque BG, Hopson B, Ettinger D, Lee A (2021) Tethered spinal cord among individuals with myelomeningocele: an analysis of the National Spina Bifida Patient Registry. J Neurosurg Pediatr 28:21–27CrossRef Dias MS, Wang M, Rizk EB, Bowman R, Partington MD, Blount JP, Rocque BG, Hopson B, Ettinger D, Lee A (2021) Tethered spinal cord among individuals with myelomeningocele: an analysis of the National Spina Bifida Patient Registry. J Neurosurg Pediatr 28:21–27CrossRef
77.
Zurück zum Zitat Kim I, Hopson B, Aban I, Rizk EB, Dias MS, Bowman R, Ackerman LL, Partington MD, Castillo H, Castillo J (2018) Decompression for Chiari malformation type II in individuals with myelomeningocele in the National Spina Bifida Patient Registry. J Neurosurg Pediatr 22:652–658PubMedPubMedCentralCrossRef Kim I, Hopson B, Aban I, Rizk EB, Dias MS, Bowman R, Ackerman LL, Partington MD, Castillo H, Castillo J (2018) Decompression for Chiari malformation type II in individuals with myelomeningocele in the National Spina Bifida Patient Registry. J Neurosurg Pediatr 22:652–658PubMedPubMedCentralCrossRef
78.
Zurück zum Zitat Kim I, Hopson B, Aban I, Rizk EB, Dias MS, Bowman R, Ackerman LL, Partington MD, Castillo H, Castillo J (2018) Treated hydrocephalus in individuals with myelomeningocele in the National Spina Bifida Patient Registry. J Neurosurg Pediatr 22:646–651PubMedPubMedCentralCrossRef Kim I, Hopson B, Aban I, Rizk EB, Dias MS, Bowman R, Ackerman LL, Partington MD, Castillo H, Castillo J (2018) Treated hydrocephalus in individuals with myelomeningocele in the National Spina Bifida Patient Registry. J Neurosurg Pediatr 22:646–651PubMedPubMedCentralCrossRef
79.
Zurück zum Zitat Kim S, Ward E, Dicianno BE, Clayton GH, Sawin KJ, Beierwaltes P, Thibadeau J, Walker W, Smith K, Freeman K (2015) Factors associated with pressure ulcers in individuals with spina bifida. Arch Phys Med Rehabil 96(1435–1441):e1431 Kim S, Ward E, Dicianno BE, Clayton GH, Sawin KJ, Beierwaltes P, Thibadeau J, Walker W, Smith K, Freeman K (2015) Factors associated with pressure ulcers in individuals with spina bifida. Arch Phys Med Rehabil 96(1435–1441):e1431
80.
Zurück zum Zitat Liu T, Ouyang L, Thibadeau J, Wiener JS, Routh JC, Castillo H, Castillo J, Freeman KA, Sawin KJ, Smith K (2018) Longitudinal study of bladder continence in patients with spina bifida in the National Spina Bifida Patient Registry. J Urol 199:837–843PubMedCrossRef Liu T, Ouyang L, Thibadeau J, Wiener JS, Routh JC, Castillo H, Castillo J, Freeman KA, Sawin KJ, Smith K (2018) Longitudinal study of bladder continence in patients with spina bifida in the National Spina Bifida Patient Registry. J Urol 199:837–843PubMedCrossRef
81.
Zurück zum Zitat Wiener JS, Suson KD, Castillo J, Routh JC, Tanaka S, Liu T, Ward E, Thibadeau J, Joseph D (2017) Bowel management and continence in adults with spina bifida: results from the National Spina Bifida Patient Registry 2009–15. Journal of pediatric rehabilitation medicine 10:335–343PubMedPubMedCentralCrossRef Wiener JS, Suson KD, Castillo J, Routh JC, Tanaka S, Liu T, Ward E, Thibadeau J, Joseph D (2017) Bowel management and continence in adults with spina bifida: results from the National Spina Bifida Patient Registry 2009–15. Journal of pediatric rehabilitation medicine 10:335–343PubMedPubMedCentralCrossRef
Metadaten
Titel
Multidisciplinary spina bifida clinic: the Chicago experience
verfasst von
Nathan A. Shlobin
Elizabeth B. Yerkes
Vineeta T. Swaroop
Sandi Lam
David G. McLone
Robin M. Bowman
Publikationsdatum
23.07.2022
Verlag
Springer Berlin Heidelberg
Erschienen in
Child's Nervous System / Ausgabe 9/2022
Print ISSN: 0256-7040
Elektronische ISSN: 1433-0350
DOI
https://doi.org/10.1007/s00381-022-05594-5

Neu im Fachgebiet Chirurgie

Nach Vollremission bei Ösophagus-Ca. – Operation erstmal aussetzen?

Studienziel erreicht, dennoch viele Fragen offen. So lassen sich die Ergebnisse der SANO-Studie zur Active-Surveillance versus sofortigen Ösophagektomie nach neoadjuvanter Komplettremission zusammenfassen. Interessant sind die Daten so oder so.

Nicht weniger Infektionen unter Vakuumversiegelungstherapie

Nach Ergebnissen der britisch-australischen SUNRISE-Studie scheint eine Unterdruck-Wundtherapie Infektionen bei abdominell Notoperierten nicht besser verhindern zu können als eine herkömmliche Wundversorgung.

Vergessene OP-Unterlage erst zwei Monate postoperativ entdeckt

Es sollte nie passieren, passiert aber doch: chirurgisches Material, das unbemerkt im Körper verbleibt. Im vorliegenden Fall wurde der Fremdkörper trotz seiner Größe erst nach zwei Monaten entdeckt – nachdem der Patient fast daran gestorben wäre.

Nur selten ernste Komplikationen bei endoskopischer Sinuschirurgie

Etwa 3% der Menschen mit einer endoskopischen Nasennebenhöhlenoperation entwickeln ausgeprägtes Nasenbluten. Andere Komplikationen, wie Verletzungen des Nervus opticus oder eine Meningitis, treten nur äußerst selten auf, legt eine Registeranalyse nahe.

Update Chirurgie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.