Spina bifida grown up

Journal of Developmental and Behavioral Pediatrics

Volumn 34, Issue 3, 2013, Pages 206-215

  Liptak, Gregory S ^a   Garver, Kimberlee ^a   Dosa, Nienke P ^a  

^a State University of New York Upstate Medical University: College of Medicine   (United States)

Author keywords

adulthood9; lifespan; spina bifida; transition to adulthood

Indexed keywords

ADULT; AGE; AGING; HEALTH CARE DELIVERY; HUMAN; REVIEW; SPINAL DYSRAPHISM;

ADULT; AGE FACTORS; AGING; DELIVERY OF HEALTH CARE; HUMANS; SPINAL DYSRAPHISM;

EID: 84876394345     PISSN: 0196206X     EISSN: 15367312     Source Type: Journal    
DOI: 10.1097/DBP.0b013e31828c5f88     Document Type: Review

References (69)

1. Swaroop VT, Dias L. Orthopedic management of spina bifida. Part I: Hip, knee, and rotational deformities. J Child Orthop. 2009;3: 441-449
2. Chadduck W, Adametz J. Incidence of seizures in patients with myelomeningocele: A multifactorial analysis. Surg Neurol. 1988;30: 281-285
3. Barf HA, Post MW, Verhoef M, Jennekens-Schinkel A, Gooskens RH, Prevo AJ. Restrictions in social participation of young adults with spina bifida. Disabil Rehabil. 2009;31:921-927
4. Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: A 25-year prospective. Pediatr Neurosurg. 2001; 34:114-120
5. Davis BE, Daley CM, Shurtleff DB, et al. Long-term survival of individuals with myelomeningocele. Pediatr Neurosurg. 2005;41: 186-191
6. Shin M, Besser LM, Correa A. Prevalence of spina bifida among children and adolescents in metropolitan Atlanta. Birth Defects Res A Clin Mol Teratol. 2008;82:748-754
7. Ouyang L, Grosse SD, Armour BS, Waitzman NJ. Health care expenditures of children and adults with spina bifida in a privately insured U.S. population. Birth Defects Res A Clin Mol Teratol. 2007;79:552-558
8. Bamer AM, Connell FA, Dudgeon BJ, Johnson KL. Frequency of purchase and associated costs of assistive technology for Washington State Medicaid program enrollees with spina bifida by age. Disabil Health J. 2010;3:155-161
9. McDonnell GV, McCann JP. Why do adults with spina bifida and hydrocephalus die? A clinic-based study. Eur J Pediatr Surg.2000; 10(suppl 1):31-32
10. Singhal B, Mathew KM. Factors affecting mortality and morbidity in adult spina bifida. Eur J Pediatr Surg. 1999;9(suppl 1):31-32
11. Young NL, Steele C, Fehlings D, Jutai J, Olmsted N, Williams JI. Use of health care among adults with chronic and complex physical disabilities of childhood. Disabil Rehabil. 2005;27: 1455-1460
12. Kinsman SL, Doehring MC. The cost of preventable conditions in adults with spina bifida. Eur J Pediatr Surg.1996;6(suppl 1):17-20
13. Dicianno BE, Wilson R. Hospitalizations of adults with spina bifida and congenital spinal cord anomalies. Arch Phys Med Rehabil. 2010;91:529-535
14. West C, Brodie L, Dicker J, Steinbeck K. Development of health support services for adults with spina bifida. Disabil Rehabil. 2011; 33:2381-2388
15. World Health Organization. International Classification of Functioning, Disability and Health. Geneva: World Health Organization; 2001
16. Rimmer JH, Riley B, Wang E, Rauworth A, Jurkowski J. Physical activity participation among persons with disabilities barriers and facilitators. Am J Prev Med. 2004;26:419-425
17. Buffart LM, van den Berg-Emons RJ, Burdorf A, Janssen WG, Stam HJ, Roebroeck ME. Cardiovascular disease risk factors and the relationships with physical activity, aerobic fitness, and body fat in adolescents and young adults with myelomeningocele. Arch Phys Med Rehabil. 2008;89:2167-2173
18. Dauvilliers Y, Stal V, Abril B, et al. Chiari malformation and sleep related breathing disorders. J Neurol Neurosurg Psychiatry. 2007; 78:1344-1348
19. Husmann DA. Malignancy after gastrointestinal augmentation in childhood. Ther Adv Urol. 2009;1:5-11
20. Verhoef M, Lurvink M, Barf HA, et al. High prevalence of incontinence among young adults with spina bifida: Description, prediction and problem perception. Spinal Cord. 2005;43:331-340
21. Carstens C, Paul K, Niethard FU, Pfeil J. Effect of scoliosis surgery on pulmonary function in patients with myelomeningocele. J Pediatr Orthop. 1991;11:459-464
22. Piatt JH Jr. Treatment of myelomeningocele: A review of outcomes and continuing neurosurgical considerations among adults. J Neurosurg Pediatr. 2010;6:515-525
23. Boot CR, van Langen H, Hopman MT. Arterial vascular properties in individuals with spina bifida. Spinal Cord. 2003;41:242-246
24. Bar CA. Evaluation of cushions using dynamic pressure measurement. Prosthet Orthot Int. 1991;15:232-240
25. Palmer JS, Kaplan WE, Firlit CF. Erectile dysfunction in patients with spina bifida is a treatable condition. J Urol. 2000;164(3 Pt 2): 958-961
26. Arata M, Grover S, Dunne K, Bryan D. Pregnancy outcome and complications in women with spina bifida. J Reprod Med. 2000;45: 743-748
27. McDonnell GV, McCann JP. Issues of medical management in adults with spina bifida. Childs Nerv Syst. 2000;16:222-227
28. Valtonen KM, Goksor LA, Jonsson O, Mellstrom D, Alaranta HT, Viikari-Juntura ER. Osteoporosis in adults with meningomyelocele: An unrecognized problem at rehabilitation clinics. Arch Phys Med Rehabil. 2006;87:376-382
29. Dosa NP, Eckrich M, Katz DA, Turk M, Liptak GS. Incidence, prevalence and characteristics of fractures among children adolescents and adults with spina bifida. J Spinal Cord Med. 2007; 30:S5-S9
30. Nagarkatti DG, Banta JV, Thomson JD. Charcot arthropathy in spina bifida. J Pediatr Orthop. 2000;20:82-87
31. Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: A 25-year prospective. Pediatr Neurosurg. 2001; 34:114-120
32. Olsson I, Dahl M, Mattsson S, Wendelius M, Astrom E, Westbom L. Medical problems in adolescents with myelomeningocele (MMC): An inventory of the Swedish MMC population born during 1986- 1989. Acta Paediatr. 2007;96:446-449
33. Yardley IE, Pauniaho SL, Baillie CT, et al. After the honeymoon comes divorce: Long-term use of the antegrade continence enema procedure. J Pediatr Surg. 2009;44:1274-1276
34. MacNeily AE, Jafari S, Scott H, Dalgetty A, Afshar K. Health related quality of life in patients with spina bifida: A prospective assessment before and after lower urinary tract reconstruction. J Urol. 2009;182(4 suppl):1984-1991
35. Austin JC, Elliott S, Cooper CS. Patients with spina bifida and bladder cancer: Atypical presentation, advanced stage and poor survival. J Urol. 2007;178(3 Pt 1):798-801
36. Buffart LM, Roebroeck ME, Rol M, Stam HJ, van den Berg-Emons RJ. Triad of physical activity, aerobic fitness and obesity in adolescents and young adults with myelomeningocele. J Rehabil Med. 2008;40: 70-75
37. Dosa NP, Foley JT, Eckrich M, Woodall-Ruff D, Liptak GS. Obesity across the lifespan among persons with spina bifida. Disabil Rehabil. 2009;31:914-920
38. Buffart LM, van den Berg-Emons RJ, Burdorf A, Janssen WG, Stam HJ, Roebroeck ME. Cardiovascular disease risk factors and the relationships with physical activity, aerobic fitness, and body fat in adolescents and young adults with myelomeningocele. Arch Phys Med Rehabil. 2008;89:2167-2173
39. Garcia AM, Dicianno BE. The frequency of lymphedema in an adult spina bifida population. Am J Phys Med Rehabil. 2011;90:89-96
40. Simon TD, Lamb S, Murphy NA, et al. Who will care for me next? Transitioning to adulthood with spina bifida. Pediatrics. 2009;124: 1431-1437
41. Swaminathan S, Paton JY, Ward SL, Jacobs RA, Sargent CW, Keens TG. Abnormal control of ventilation in adolescents with myelodysplasia. J Pediatr. 1989;115:898-903
42. Dennis M, Landry SH, Barnes M, Fletcher JM. A model of neurocognitive function in spina bifida over the life span. J Int Neuropsychol Soc. 2006;12:285-296
43. Dennis M, Nelson R, Jewell D, Fletcher JM. Prospective memory in adults with spina bifida. Childs Nerv Syst. 2010;26:1749-1755
44. Kumar M, Gupta RK, Saksena S, et al. A diffusion tensor imaging study of deep gray and white matter brain maturation differences between patients with spina bifida cystica and healthy controls. J Clin Neurosci. 2010;17:879-885
45. Heffelfinger AK, Koop JI, Fastenau PS, et al. The relationship of neuropsychological functioning to adaptation outcome in adolescents with spina bifida. J Int Neuropsychol Soc. 2008;14: 793-804
46. Dicianno BE, Kurowski BG, Yang JM, et al. Rehabilitation and medical management of the adult with spina bifida. Am J Phys Med Rehabil. 2008;87:1027-1050
47. Valtonen K, Karlsson AK, Alaranta H, Viikari-Juntura E. Work participation among persons with traumatic spinal cord injury and meningomyelocele. J Rehabil Med. 2006;38:192-200
48. van Mechelen MC, Verhoef M, Van Asbeck FW, Post MW. Work participation among young adults with spina bifida in the Netherlands. Dev Med Child Neurol. 2008;50:772-777
49. Loomis JW, Lindsey A, Javornisky JG, Monahan JJ. Measures of cognition and adaptive behavior as predictors of adjustment outcomes in young adults with spina bifida. Eur J Pediatr Surg. 1994;4(suppl 1):35-36
50. Darrah J, Magill-Evans J, Galambos NL. Community services for young adults with motor disabilities - a paradox. Disabil Rehabil. 2010;32:223-229
51. Yassin MS, Sanyurah S, Lierl MB, et al. Evaluation of latex allergy in patients with meningomyelocele. Ann Allergy. 1992;69:207-211
52. Ausili E, Tabacco F, Focarelli B, Nucera E, Patriarca G, Rendeli C. Prevalence of latex allergy in spina bifida: Genetic and environmental risk factors. Eur Rev Med Pharmacol Sci. 2007;11: 149-153
53. Wright LE, Alderson JD, Ash D, Short JA. Clinical risk: Identifying latex allergy in adults with spina bifida. Eur J Pediatr Surg. 2001;11 (suppl 1):S47-S48
54. Appleton PL, Ellis NC, Minchom PE, Lawson V, Böll V, Jones P. Depressive symptoms and self-concept in young people with spina bifida. J Pediatr Psychol. 1997;22:707-722
55. Bellin MH, Zabel TA, Dicianno BE, et al. Correlates of depressive and anxiety symptoms in young adults with spina bifida. J Pediatr Psychol. 2010;35:778-789
56. Essner BS, Holmbeck GN. The impact of family, peer, and school contexts on depressive symptoms in adolescents with spina bifida. Rehabil Psychol. 2010;55:340-350
57. Oddson BE, Clancy CA, McGrath PJ. The role of pain in reduced quality of life and depressive symptomology in children with spina bifida. Clin J Pain. 2006;22:784-789
58. Antle BJ, Montgomery G, Stapleford C. The many layers of social support: Capturing the voices of young people with spina bifida and their parents. Health Soc Work. 2009;34:97-106
59. Melissa HB, Zabel A, Dicianno BE, et al. Correlates of depression and anxiety symptoms in young adults with spina bifida. J Pediatr Psychol. 2010;35:778-789
60. Bradley N, Poppen W. Assistive technology, computers and internet may decrease sense of isolation for homebound elderly and disabled persons. Technol Disabil. 2000;15:19-25
61. Exner G, Burgdörfer H, Bohatyrewicz A, Bomnüter G, Wenck B. The lack of comprehensive care causing complications in patients with myelodysplasia. Paraplegia. 1993;31:102-104
62. American Academy of Family Physicians (AAFP), American Academy of Pediatrics (AAP), American College of Physicians (ACP), American Osteopathic Association (AOA). Joint principles of the patient centered medical home. Available at: Http://www. pcpcc.net/content/joint-principles-patient-centered- medical-home. Accessed September 6, 2011
63. Swanson ME. Need for the life course model for spina bifida. Pediatr Clin North Am. 2010;57:893-901
64. Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil. 2007;88:1064-1073
65. Sawyer SM, Macnee S. Transition to adult health care for adolescents with spina bifida: Research issues. Dev Disabil Res Rev. 2010;16:60-65
66. Zabel TA, Linroth R, Fairman AD. The Life Course Model Web site: An online transition-focused resource for the spina bifida community. Pediatr Clin North Am. 2010;57:911- 917
67. Healthy transitions: Moving from pediatric to adult health care [homepage on the Internet]. Syracuse, NY. Available at: Http: //healthytransitionsny.org. Accessed August 31, 2011
68. Noffsinger EB. Running Group Visits in Your Practice. New York, NY: Springer; 2009
69. Field B. The child with spina bifida: Medical and social aspects of the problems of a child with multiple handicaps and his family. Med J Aust. 1972;2:1284-1287