What Do We Really Know About the Transition to Adult-Centered Health Care? A Focus on Cerebral Palsy and Spina Bifida

Archives of Physical Medicine and Rehabilitation

Volumn 88, Issue 8, 2007, Pages 1064-1073

  Binks, Jessie A ^a   Barden, Wendy S ^b,d   Burke, Tricia A ^a   Young, Nancy L ^a,b,c,d  

^a LAURENTIAN UNIVERSITY   (Canada)

^b HOSPITAL FOR SICK CHILDREN   (Canada)

^c INSTITUTE FOR CLINICAL EVALUATIVE SCIENCES   (Canada)

^d UNIVERSITY OF TORONTO   (Canada)

Author keywords

Cerebral palsy; Disabled children; Health care systems; Rehabilitation; Spinal dysraphism

Indexed keywords

ADULT; CEREBRAL PALSY; CHRONIC DISEASE; HEALTH CARE ACCESS; HEALTH CARE DELIVERY; HEALTH CARE NEED; HEALTH CARE SYSTEM; HUMAN; LONG TERM CARE; ONSET AGE; PHYSICAL DISABILITY; REVIEW; SEARCH ENGINE; SPINA BIFIDA;

ADULT; CEREBRAL PALSY; HEALTH SERVICES FOR THE AGED; HUMANS; PATIENT TRANSFER; SPINAL DYSRAPHISM; UNITED STATES;

EID: 34547229715     PISSN: 00039993     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.apmr.2007.04.018     Document Type: Review

References (150)

1. Blum R. Summary of conference recommendations. J Adolesc Health 17 (1995) 6-9
2. Stewart D.A., Law M.C., Rosenbaum P., and Willms D.G. A qualitative study of the transition to adulthood for youth with physical disabilities. Phys Occup Ther Pediatr 21 (2001) 3-21
3. Viner R. Barriers and good practice in transition from paediatric to adult care. J R Soc Med 94 Suppl 40 (2001) 2-4
4. Cooley C.W. Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics 114 (2004) 1106-1113
5. Scal P., and Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 115 (2005) 1607-1612
6. Reiss J., and Gibson R. Health care transition: destinations unknown. Pediatrics 110 6 Pt 2 (2002) 1307-1314
7. Rosen D.S. Transition to adult health care for adolescents and young adults with cancer. Cancer 71 10 Suppl 1 (1993) 3411-3414
8. White P.H. Success on the road to adulthood. Issues and hurdles for adolescents with disabilities. Rheum Dis Clin North Am 23 (1997) 697-707
9. American Academy of Pediatrics. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110 6 Pt 2 (2002) 1304-1306
10. Fox A. Physicians as barriers to successful transitional care. Int J Adolesc Med Health 14 (2002) 3-7
11. Tuffrey C., and Pearce A. Transition from paediatric to adult medical services for young people with chronic neurological problems. J Neurol Neurosurg Psychiatry 74 (2003) 1011-1013
12. Surgeon General's conference. In: Magrab P., and Millar H. (Eds). Growing up and getting medical care: youth with special health care needs (1989), National Center for Networking Community Based Services, Georgetown University Child Development Center, Washington (DC)
13. Paone M., Whitehouse S., and Stanford D. Challenges of transition: coping with a chronic condition. B C Med J 40 (1998) 73-75
14. Sawyer S.M., Blair S., and Bowes G. Chronic illness in adolescents: transfer or transition to adult services?. J Paediatr Child Health 33 (1997) 88-90
15. McDonagh J.E. Growing up and moving on: transition from pediatric to adult care. Pediatr Transplant 9 (2005) 364-372
16. Reiss J.G., Gibson R.W., and Walker L.R. Health care transition: youth, family, and provider perspectives. Pediatrics 115 (2005) 112-120
17. Blum R.W., Garell D., Hodgman C.H., et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 14 (1993) 570-576
18. American Academy of Pediatrics Committee on Children With Disabilities. Transition of care provided for adolescents with special health care needs. Pediatrics 98 (1996) 1203-1206
19. Blomquist K.B., Brown G., Peersen A., and Presler E.P. Transitioning to independence: challenges for young people with disabilities and their caregivers. Orthop Nurs 17 (1998) 27-35
20. Lewis-Gary M.D. Transitioning to adult health care facilities for young adults with a chronic condition. Pediatr Nurs 27 (2001) 521-524
21. Hergenroeder A.C. The transition into adulthood for children and youth with special health care needs. Tex Med 98 (2002) 51-58
22. Peterson P.M., Rauen K.K., Brown J., and Cole J. Spina bifida: the transition into adulthood begins in infancy. Rehabil Nurs 19 (1994) 229-238
23. Rosen D.S. Transition from pediatric to adult-oriented health care for the adolescent with chronic illness or disability. Adolesc Med 5 (1994) 241-248
24. Rosen D.S., Blum R.W., Britto M., Sawyer S.M., and Siegel D.M. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health 33 (2003) 309-311
25. Baldassano R.N., Ferry G., Griffiths A., Mack D., Markowitz J., and Winter H. Transition of the patient with inflammatory bowel disease from pediatric to adult health care: recommendations of the North American Society for Pediatric Gastroenterology, Hapatology and Nutrition. J Pediatr Gastroenterol Nutr 34 (2002) 245-248
26. Bennett D.L., Towns S.J., and Steinbeck K.S. Smoothing the transition to adult care. The most important need is for a change of attitude and approach. Med J Aust 182 (2005) 373-374
27. Conway S.P. Transition from paediatric to adult-orientated care for adolescents with cystic fibrosis. Disabil Rehabil 20 (1998) 209-216
28. Callahan S.T., Feinstein R., and Keenan P. Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease. Curr Opin Pediatr 13 (2001) 310-316
29. Fiorentino L., Datta D., Gentle S., et al. Transition from school to adult life for physically disabled young people. Arch Dis Child 79 (1998) 306-311
30. Rosenbaum P. Cerebral palsy: what parents and doctors want to know. BMJ 326 (2003) 970-974
31. Schidlow D.V., and Fiel S.B. Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult health care systems. Med Clin North Am 74 (1990) 1113-1120
32. McDonnell G.V., and McCann J.P. Why do adults with spina bifida and hydrocephalus die?. A clinic-based study. Eur J Pediatr Surg 10 Suppl 1 (2000) 31-32
33. Rosen D.S. Between two worlds: bridging the cultures of child health and adult medicine. J Adolesc Health 17 (1995) 10-16
34. Kinsman S.L., Levey E., Ruffing V., Stone J., and Warren L. Beyond multidisciplinary care: a new conceptual model for spina bifida services. Eur J Pediatr Surg 10 Suppl 1 (2000) 35-38
35. Stein R.E. Challenges in long-term health care for children. Ambul Pediatr 1 (2001) 280-288
36. King S., Teplicky R., King G., and Rosenbaum P. Family-centered service for children with cerebral palsy and their families: a review of the literature. Semin Pediatr Neurol 11 (2004) 78-86
37. Lotstein D.S., McPherson M., Strickland B., and Newacheck P.W. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics 115 (2005) 1562-1568
38. Sawyer S.M., Collins N., Bryan D., Brown D., Hope M.A., and Bowes G. Young people with spina bifida: transfer from paediatric to adult health care. J Paediatr Child Health 34 (1998) 414-417
39. Anderson D.L., Flume P.A., Hardy K.K., and Gray S. Transition programs in cystic fibrosis centers: perceptions of patients. Pediatr Pulmonol 33 (2002) 327-331
40. Litt I.F. Moving on: who is on-board?. J Adolesc Health 17 (1995) 1
41. Betz C.L. Facilitating the transition of adolescents with chronic conditions from pediatric to adult health care and community settings. Issues Compr Pediatr Nurs 21 (1998) 97-115
42. Carson A.R., Hieber K.V., Tsamasiros J., Bartsocas C.S., and McGill M. Adult pediatric patients-transition of the adolescent from the children's to the adults' diabetes clinic-how do we organize smooth, effective transfer from paediatric to adult diabetes care?. Am J Nurs 101 (2001) 46-55
43. David T.J. Transition from paediatric clinic to the adult service. J R Soc Med 94 (2001) 373-374
44. Schidlow D.V. Transition in cystic fibrosis: much ado about nothing?. A pediatrician's view. Pediatr Pulmonol 33 (2002) 325-326
45. Watson A.R. Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol 20 (2005) 113-117
46. McDonagh J.E., and Kelly D.A. Transitioning care of the pediatric recipient to adult caregivers. Pediatr Clin North Am 50 (2003) 1561-1583
47. Roland M., Jacobs R., Angone E., Fallick B., and MacKenzie R. Principles of management of adolescents with spina bifida in the ambulatory setting. Eur J Pediatr Surg 7 Suppl 1 (1997) 57-58
48. Landau L.I. Cystic fibrosis: transition from paediatric to adult physician's care. Thorax 50 (1995) 1031-1032
49. Webb A.K., Jones A.W., and Dodd M.E. Transition from paediatric to adult care: problems that arise in the adult cystic fibrosis clinic. J R Soc Med 94 Suppl 40 (2001) 8-11
50. Schultz A., and Liptak G. Helping adolescents who have disabilities negotiate transitions to adulthood. Issues Compr Pediatr Nurs 21 (1998) 187-201
51. Whitehouse S., and Paone M.C. Patients in transition: bridging the health care gap from youth to adulthood. Contemp Pediatr 13 (1998) 5-6
52. Rosen D. Transition of young people with respiratory diseases to adult health care. Paediatr Respir Rev 5 (2004) 124-131
53. Scal P. Transition for youth with chronic conditions: primary care physicians' approaches. Pediatrics 110 (2002) 1315-1321
54. Olsen D.G., and Swigonski N.L. Transition to adulthood: the important role of the pediatrician. Pediatrics 113 3 Pt 1 (2004) e159-e162
55. American Academy of Pediatrics Committee on Children with Disabilities. The role of the pediatrician in transitioning children and adolescents with developmental disabilities and chronic illnesses from school to work or college. Pediatrics 106 (2000) 854-856
56. Bhakta B.B., and Chamberlain M.A. Transition from paediatric clinic to the adult service. [letter]. J R Soc Med 94 (2001) 659
57. Conway S.P. Transition programs in cystic fibrosis centres. Pediatr Pulmonol 37 (2004) 1-3
58. Worthington R.C. Effective transitions for families: life beyond the hospital. Pediatr Nurs 21 (1995) 86-87
59. Morgan D.J., Blackburn M.C., and Bax M.C. A new clinic for young adults with spina bifida and/or hydrocephalus-age 16-25 years. Eur J Pediatr Surg 3 Suppl 1 (1993) 23-24
60. Stellman-Ward G., Bannister C.M., and Lewis M. Assessing the needs of the adult with spina bifida. Eur J Pediatr Surg 3 Suppl 1 (1993) 14-16
61. Stevenson C.J., Pharoah P.O., and Stevenson R. Cerebral palsy-the transition from youth to adulthood. Dev Med Child Neurol 39 (1997) 336-342
62. Buran C.F., McDaniel A.M., and Brei T.J. Needs assessment in a spina bifida program-a comparison of the perceptions by adolescents with spina bifida and their parents. Clin Nurse Spec 16 (2002) 256-262
63. Buzio A., Morgan J., and Blount D. The experiences of adults with cerebral palsy during periods of hospitalization. Aust J Adv Nurs 19 (2002) 8-14
64. Young N.L., Steele C., Fehlings D., Jutai J., Olmsted N., and Williams J.I. Use of health care among adults with chronic and complex physical disabilities of childhood. Disabil Rehabil 27 (2005) 1455-1460
65. Young N., McCormick A., Mills W., et al. The transition study: a look at youth and adults with cerebral palsy, spina bifida and acquired brain injury. Phys Occup Ther Pediatr 26 (2006) 25-45
66. King G.A., Cathers T., Polgar J.M., MacKinnon E., and Havens L. Success in life for older adolescents with cerebral palsy. Qual Health Res 10 (2000) 734-749
67. Darrah J., Magil-Evans J., and Adkins R. How well are we doing?. Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery. Disabil Rehabil 24 (2002) 542-549
68. Magill-Evans J., Wiart L., Darrah J., and Kratochvil M. Beginning the transition to adulthood: the experiences of six families with youths with cerebral palsy. Phys Occup Ther Pediatr 25 (2005) 19-36
69. Coleman E.A., and Berenson R.A. Lost in transition: challenges and opportunities for improving the quality of transitional care. Ann Intern Med 141 (2004) 533-535
70. Evans P.M., Evans S.J., and Alberman E. Cerebral palsy: why we must plan for survival. Arch Dis Child 65 (1990) 1329-1333
71. Cathels B.A., and Reddihough D.S. The health care of young adults with cerebral palsy. Med J Aust 159 (1993) 444-446
72. Laishram H., Kennedy R., Maroun F., and Price D. The impact of spina bifida on the medical services of Newfoundland and Labrador. J Pediatr Surg 28 (1993) 1098-1101
73. Morgan D.J., Blackburn M., and Bax M. Adults with spina bifida and/or hydrocephalus. Postgrad Med J 71 (1995) 17-21
74. O'Grady R.S., Crain L.S., and Kohn J. The prediction of long-term functional outcomes of children with cerebral palsy. Dev Med Child Neurol 37 (1995) 997-1005
75. Kinsman S.L., and Doehring M.C. The cost of preventable condition in adults with spina bifida. Eur J Pediatr Surg 6 Suppl 1 (1996) 17-20
76. Turk M.A., Geremski C.A., Rosenbaum P.F., and Weber R.J. The health status of women with cerebral palsy. Arch Phys Med Rehabil 78 12 Suppl 5 (1997) S10-S17
77. Dise J.E., and Lohr M.E. Examination of deficits in conceptual reasoning abilities associated with spina bifida. Am J Phys Med Rehabil 77 (1998) 247-251
78. Ando N., and Ueda S. Functional deterioration in adults with cerebral palsy. Clin Rehabil 14 (2000) 300-306
79. McDonnell G.V., and McCann J.P. Issues of medical management in adults with spina bifida. Childs Nerv Syst 16 (2000) 222-227
80. Murphy K.P., Molnar G.E., and Lankasky K. Employment and social issues in adults with cerebral palsy. Arch Phys Med Rehabil 81 (2000) 807-811
81. Andersson C., and Mattsson E. Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion. Dev Med Child Neurol 43 (2001) 76-82
82. Bottos M., Feliciangeli A., Sciuto L., Gericke C., and Vianello A. Functional status of adults with cerebral palsy and implications for treatment of children. Dev Med Child Neurol 43 (2001) 516-528
83. Bowman R.M., McLone D.G., Grant J.A., Tomita T., and Ito J.A. Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg 34 (2001) 114-120
84. Liptak G.S., O'Donnell M., Conaway M., et al. Health status of children with moderate to severe cerebral palsy. Dev Med Child Neurol 43 (2001) 364-370
85. van der Dussen L., Nieuwstraten W., Roebroeck M., and Stam H.J. Functional level of young adults with cerebral palsy. Clin Rehabil 15 (2001) 84-91
86. Cate I.M., Kennedy C., and Stevenson J. Disability and quality of life in spina bifida and hydrocephalus. Dev Med Child Neurol 44 (2002) 317-322
87. Padua L., Rendeli C., Rabini A., Girardi E., Tonali P., and Salvaggio E. Health-related quality of life and disability in young patients with spina bifida. Arch Phys Med Rehabil 83 (2002) 1384-1388
88. Andersson C., Grooten W., Hellsten M., Kaping M., and Mattsson E. Adults with cerebral palsy: walking ability after progressive strength training. Dev Med Child Neurol 45 (2003) 220-228
89. Hunt G.M., and Oakeshott P. Outcome in people with open spina bifida at age 35: prospective community based cohort study. BMJ 326 (2003) 1365-1366
90. Jahnsen R. Fatigue in adults with cerebral palsy in Norway compared with the general population. Dev Med Child Neurol 45 (2003) 296-303
91. Andren E., and Grimby G. Dependence in daily activities and life satisfaction in adult subjects with cerebral palsy or spina bifida: a follow-up study. Disabil Rehabil 26 (2004) 528-536
92. Iddon J.L., Morgan D.J., Loveday C., and Pickard J. Neuropsychological profile of young adults with spina bifida with or without hydrocephalus. J Neurol Neurosurg Psychiatry 75 (2004) 1112-1118
93. Rendeli C., Ausili E., Tabacco F., et al. Assessment of health status in children with spina bifida. Spinal Cord 43 (2005) 230-235
94. Murphy K.P., Molnar G.E., and Lankasky K. Medical and functional status of adults with cerebral palsy. Dev Med Child Neurol 37 (1995) 1075-1084
95. Sawin K.J., Buran C.F., Brei T.J., and Fastenau P.S. Correlates of functional status, self-management, and developmental competence outcomes in adolescents with spina bifida. SCI Nurs 20 (2003) 72-85
96. Sawyer S.M., and Roberts K.V. Sexual and reproductive health in young people with spina bifida. Dev Med Child Neurol 41 (1999) 671-675
97. Schwartz L., Engel J.M., and Jensen M.P. Pain in persons with cerebral palsy. Arch Phys Med Rehabil 80 (1999) 1243-1246
98. Hutton J.L., Cooke T., and Pharoah P.O. Life expectancy in children with cerebral palsy. BMJ 309 (1994) 431-435
99. Crichton J.U., Mackinnon M., and White C.P. The life expectancy of persons with cerebral palsy. Dev Med Child Neurol 37 (1995) 567-576
100. Strauss D., and Shavelle R. Life expectancy of adults with cerebral palsy. Dev Med Child Neurol 40 (1998) 369-375
101. Strauss D.J., Shavelle R.M., and Anderson T.W. Life expectancy of children with cerebral palsy. Pediatr Neurol 18 (1998) 143-149
102. Williams K., and Alberman E. Survival in cerebral palsy: the role of severity and diagnostic labels. Dev Med Child Neurol 40 (1998) 376-379
103. Maudsley G., Hutton J.L., and Pharoah P.O. Cause of death in cerebral palsy: a descriptive study. Arch Dis Child 81 (1999) 390-394
104. Singhal B., and Mathew K.M. Factors affecting mortality and morbidity in adult spina bifida. Eur J Pediatr Surg 9 Suppl 1 (1999) 31-32
105. Dillon C.M., Davis B.E., Duguay S., Seidel K.D., and Shurtleff D.B. Longevity of patients born with myelomeningocele. Eur J Pediatr Surg 10 Suppl 1 (2000) 33-34
106. Hutton J.L., Colver A.F., and Mackie P.C. Effect of severity of disability on survival in north east England cerebral palsy cohort. Arch Dis Child 83 (2000) 468-474
107. Blair E., Watson L., Badawi N., and Stanley F.J. Life expectancy among people with cerebral palsy in Western Australia. Dev Med Child Neurol 43 (2001) 508-515
108. Reddihough D.S., Baikie G., and Walstab J.E. Cerebral palsy in Victoria, Australia: mortality and causes of death. J Paediatr Child Health 37 (2001) 183-186
109. Hutton J.L., and Pharoah P.O. Effects of cognitive, motor, and sensory disabilities on survival in cerebral palsy. Arch Dis Child 86 (2002) 84-89
110. Hemming K., Hutton J.L., Colver A.F., and Platt M. Regional variation in survival of people with cerebral palsy in the United Kingdom. Pediatrics 116 (2005) 1383-1390
111. Hemming K., and Hutton J.L. Long-term survival for a cohort of adults with cerebral palsy. Dev Med Child Neurol 48 (2006) 90-95
112. Somerville J. Near misses and disasters in the treatment of grown-up congenital heart patients. J R Soc Med 90 (1997) 124-127
113. Nasr S.Z., Campbell C., and Howatt W. Transition program from pediatric to adult care for cystic fibrosis patients. J Adolesc Health 13 (1992) 682-685
114. Court J.M. Issues of transition to adult care. J Paediatr Child Health 29 Suppl 1 (1993) S53-S55
115. Warnell P. The transition experience of epilepsy patients/families: results of a telephone survey. Axone 20 (1998) 31-33
116. Scal P., Evans T., Blozis S., Okinow N., and Blum R. Trends in transition from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health 24 (1999) 259-264
117. Boyle M.P., Farukhi Z., and Nosky M.L. Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Ann Acad Med Singapore 32 (2001) 428-436
118. Flume P.A., Anderson D.L., Hardy K.K., and Gray S. Transition programs in cystic fibrosis centers: perceptions of pediatric and adult program directors. Pediatr Pulmonol 31 (2001) 443-450
119. Steinkamp G., Ullrich G., Muller C., Fabel H., and von der Hardt H. Transition of adult patients with cystic fibrosis from paediatric to adult care-the patients' perspective before and after start-up of an adult clinic. Eur J Med Res 6 (2001) 85-92
120. Kelly A.M., Kratz B., Bielski M., and Rinehart P.M. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics 110 (2002) 1322-1327
121. Kipps S., Bahu T., Ong K., et al. Current methods of transfer of young people with Type 1 diabetes to adult services. Diabet Med 19 (2002) 649-654
122. Geenen S.J., Powers L.E., and Sells W. Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. J Adolesc Health 32 (2003) 225-233
123. Farrant B., and Watson P.D. Health care delivery: perspectives of young people with chronic illness and their parents. J Paediatr Child Health 40 (2004) 175-179
124. Flume P.A., Taylor L.A., Anderson D.L., Gray S., and Turner D. Transition programs in cystic fibrosis centers: perceptions of team members. Pediatr Pulmonol 37 (2004) 4-7
125. McPherson M., Weissman G., Strickland B.B., van Dyck P.C., Blumberg S.J., and Newacheck P.W. Implementing community-based systems of services for children and youths with special health care needs: how well are we doing?. Pediatrics 113 (2004) 1538-1544
126. Reid G.J., Irvine M.J., McCrindle B.W., et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 113 (2004) E197-E205
127. Shaw K.L., Southwood T.R., and McDonagh J.E. Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey. Rheumatology (Oxford) 43 (2004) 211-219
128. Shaw K.L., Southwood T.R., and McDonagh J.E. Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford) 44 (2005) 806-812
129. McManus M., Newacheck P.W., and Greaney A. Young adults with special needs: prevalence, severity, and access to health services. Pediatrics 86 (1990) 674-682
130. Goodman D.M., Mendez E., Throop C., and Ogata E.S. Adult survivors of pediatric illness: the impact on pediatric hospitals. Pediatrics 110 (2002) 583-589
131. Mahon M., and Kibirige M.S. Patterns of admissions for children with special needs to the paediatric assessment unit. Arch Dis Child 89 (2004) 165-169
132. Strickland B., Weissman G., van Dyck P., Huang Z.J., and Newacheck P. Access to the medical home: results of the national survey of children with special health care needs. Pediatrics 113 (2004) 1485-1492
133. Lam P.Y., Fitzgerald B.B., and Sawyer S.M. Young adults in children's hospitals: why are they there?. Med J Aust 182 (2005) 381-384
134. Newacheck P.W., and Kim S.E. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med 159 (2005) 10-17
135. Callahan S.T., and Cooper W.O. Access to health care for young adults with disabling chronic conditions. Arch Pediatr Adolesc Med 160 (2006) 178-182
136. Oeffinger K.C., Eshelman D.A., Tomlinson G.E., and Buchanan G.R. Programs for adult survivors of childhood cancer. J Clin Oncol 16 (1998) 2864-2867
137. O'Leary C., Wieneke P., Healy M., Cronin C., O'Regan P., and Shanahan F. Celiac disease and the transition from childhood to adulthood: a 28-year follow-up. Am J Gastroenterol 99 (2004) 2437-2441
138. Bent N., Tennant A., Swift T., Posnett J., Scuffham P., and Chamberlain M.A. Team approach versus ad hoc health services for young people with physical disabilities: a retrospective cohort study. Lancet 360 (2002) 1280-1286
139. Neri M.T., and Kroll T. Understanding the consequences of access barriers to health care: experiences of adults with disabilities. Disabil Rehabil 25 (2003) 85-96
140. Zack J., Jacobs C.P., Keenan P.M., et al. Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care. Pediatr Pulmonol 36 (2003) 376-383
141. Brumfield K., and Lansbury G. Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults. Disabil Rehabil 26 (2004) 223-234
142. Shaw K.L., Southwood T.R., and McDonagh J.E. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford) 43 (2004) 770-778
143. Soanes C., and Timmons S. Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care. J Child Health Care 8 (2004) 102-112
144. Dovey-Pearce G., Hurrell R., May C., Walker C., and Doherty Y. Young adults' (16-25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health Soc Care Community 13 (2005) 409-419
145. Klingbeil H., Baer H.R., and Wilson P.E. Aging with a disability. Arch Phys Med Rehabil 85 7 Suppl 3 (2004) S68-S73
146. Bryon M., and Madge S. Transition from paediatric to adult care: psychological principles. J R Soc Med 94 Suppl 40 (2001) 5-7
147. Bakheit A.M., Bower E., Cosgrove A., et al. Opinion statement on the minimal acceptable standards of healthcare in cerebral palsy. Disabil Rehabil 23 (2001) 578-582
148. Gajdosik C.G., and Cicirello N. Secondary conditions of the musculoskeletal system in adolescents and adults with cerebral palsy. Phys Occup Ther Pediatr 21 (2001) 49-68
149. Andren E. Dependence and perceived difficulty in activities of daily living in adults with cerebral palsy and spina bifida. Disabil Rehabil 22 (2000) 299-307
150. Rapp Jr. C.E., and Torres M.M. The adult with cerebral palsy. Arch Fam Med 9 (2000) 466-472