Adult outcomes and lifespan issues for people with childhood-onset physical disability

Developmental Medicine and Child Neurology

Volumn 51, Issue 8, 2009, Pages 670-678

  Roebroeck, Marij E ^a   Jahnsen, Reidun ^b   Carona, Carlos ^c   Kent, Ruth M ^d,e   Chamberlain, Anne M ^e  

^a ERASMUS MEDICAL CENTER   (Netherlands)

^b OSLO UNIVERSITY HOSPITAL   (Norway)

^c UNIVERSITY OF COIMBRA   (Portugal)

^d PINDERFIELDS GENERAL HOSPITAL   (United Kingdom)

^e UNIVERSITY OF LEEDS   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULTHOOD; CEREBRAL PALSY; CHILDHOOD; DETERIORATION; FATIGUE; FUNCTIONAL STATUS; HEALTH CARE DELIVERY; HEALTH EDUCATION; HOUSING; HUMAN; HUMAN RELATION; INTIMACY; KINESIOTHERAPY; LIFE EXPECTANCY; LIFESPAN; LIFESTYLE; LOCOMOTION; NETHERLANDS; ONSET AGE; OUTCOME ASSESSMENT; OUTPATIENT CARE; PAIN; PATIENT CARE; PHYSICAL DISABILITY; PRIORITY JOURNAL; QUALITY OF LIFE; REHABILITATION CARE; REVIEW; SPINA BIFIDA; UNITED KINGDOM; WORK CAPACITY;

ADOLESCENT; ADULT; AGE OF ONSET; AGED; CEREBRAL PALSY; CHILD; HUMANS; LIFE EXPECTANCY; MIDDLE AGED; QUALITY OF LIFE; SPINAL DYSRAPHISM; YOUNG ADULT;

EID: 67651153140     PISSN: 00121622     EISSN: 14698749     Source Type: Journal    
DOI: 10.1111/j.1469-8749.2009.03322.x     Document Type: Review

References (40)

1. Donkervoort M, Roebroeck ME, Wiegerink DJHG, van der Heijden H, Stam HJ, Transition Research Group. Determinants of functioning of adolescents and young adults with cerebral palsy. Disabil Rehabil 2007; 29: 453-63.
2. Wiegerink DJHG, Roebroeck ME, Donkervoort M, Cohen-Kettenis PT, Stam HJ, Transition Research Group South West Netherlands. Social, intimate and sexual relationships of adolescents with cerebral palsy compared with able-bodied age mates. J Rehabil Med 2008; 40: 112-8.
3. Noreau L, Desrosiers J, Robichaud L, Fougeyrollas P, Rochette A, Viscogliosi C. Measuring social participation: Reliability of the LIFE-H in older adults with disabilities. Disabil Rehabil 2004; 26: 346-52.
4. van Meeteren J, Roebroeck ME, Celen E, Donkervoort M, Stam HJ, Transition Research Group South West Netherlands. Functional activities of the upper extremity of young adults with cerebral palsy: A limiting factor for participation? Disabil Rehabil 2008; 30: 387-95.
5. Jahnsen R. Being Adult with a 'Childhood Disease' - A Survey on Adults with Cerebral Palsy in Norway. Thesis. Oslo: University of Oslo, 2004.
6. Jahnsen R, Villien L, Stanghelle JK, Holm I. Fatigue in adults with cerebral palsy in Norway compared with the general population. Dev Med Child Neurol 2003; 45: 296-303.
7. Donkervoort M, Wiegerink DJHG, van MeeterenJ, Stam HJ, Roebroeck ME, on behalf of Transition Research Group Southwest Netherlands. Transition to adulthood: Validation of the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence. Dev Med Child Neurol 2009; 51: 53 -62.
8. Roebroeck ME, Donkervoort M, Wiegerink DJHG, van MeeterenJ, Stam HJ, on behalf of Transition Research Group Southwest Netherlands. Transition into adulthood of young adults with cerebral palsy: Limitations in achieving independent life. Dev Med Child Neurol 2007; 49 (Suppl. 111): 22.
9. Martin J, Meltzer H, Elliot D. The OPCS Surveys of Disability in Great Britain, Report 1. The Prevalence of Diability Among Adults. London: HMSO, 1988.
10. Chamberlain MA, Kent RM. The needs of young people with disabilities in transition from paediatric to adult services. Eur Medicophys 2005; 41: 111-23.
11. Nieuwenhuijsen C, Donkervoort M, Wiegerink DJHG, Roebroeck ME, Stam HJ. Unmet needs and health care utilization in young adults with cerebral palsy. Dev Med Child Neurol 2005; 47 (Suppl. 103): 42.
12. Hilberink SR, Roebroeck ME, Nieuwstraten W, Jalink L, Verheijden JMA, Stam HJ. Health issues in young adults with cerebral palsy: Towards a Life-span perspective. J Rehabil Med 2007; 39: 605-11.
13. Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N. The Canadian occupational performance measure: An outcome measure for occupational therapy. Can J Occup Ther 1990; 57: 82-87.
14. Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Musculo-skeletal pain in adults with cerebral palsy compared with the general population. J Rehabil Med 2004; 36: 78-84.
15. Natvig B, Nessioy I, Bruusgaard D, Rutle O. Musculo-skeletal symptoms in a local community. Eur J Gen Pract 1995; 1: 25-8.
16. Loge JH, Kaasa S. Short Form 36 (SF36) health survey: Normative data from the general Norwegian population. Scand J Soc Med 1998; 26: 250-58.
17. Buffart LM, Roebroeck ME, Rol M, Stam HJ, van den Berg-Emons RJG, Transition Research Group South West Netherlands. Triad of physical activity, aerobic fitness and obesity in adolescents and young adults with myelomeningocele. J Rehabil Med 2008; 40: 70-75.
18. 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: 2167-73.
19. Nieuwenhuijsen C, van der Slot WM, Beelen A, Arendzen JH, Roebroeck ME, Stam HJ, van den Berg-Emons RJ; Transition Research Group South West Netherlands. Inactive lifestyle in adults with bilateral spastic cerebral palsy. J Rehabil Med 2009; 41: 375-82.
20. Pimm P. The progression of cerebral palsy in adulthood. Educ Child Psychol 1992; 9: 3-4.
21. Jahnsen R, Villien L, Egeland T, Stanghelle JK, Holm I. Locomotion skills in adults with cerebral palsy. Clin Rehabil 2004; 18: 309-16.
22. Huang I-Ch, Wu AW, Frangakis C. Do the SF-36 and WHOQOL-BREF measure the same constructs? Evidence from the Taiwan population. Qual Life Res 2006; 15: 15-24.
23. Overeynder JC, Turk MA. Cerebral palsy and aging: A framework for promoting the health of older persons with cerebral palsy. Top Geriatr Rehabil 1998; 13: 19-24.
24. Krakovsky G, Huth MM, Lin L, Levin RS. Functional changes in children, adolescents, and young adults with cerebral palsy. Res Dev Disabil 2007; 28: 331-40.
25. Bruce ML, Seeman TE, Merrill SS, Blazer DG. The impact of depressive symptomatology on physical disability. MacArthur Studies of Successful Aging. Am J Public Health 1994; 84: 1796-99.
26. Engel JM, Jensen MP, Hoffman AJ, Kartin D. Pain in persons with cerebral palsy: Extension and cross validation. Arch Phys Med Rehabil 2003; 84: 1125-28.
27. McCabe MP, Taleporos C. Sexual esteem, sexual satisfaction, and sexual behavior among people with physical disability. Arch Sex Behav 2003; 32: 359-69.
28. Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Health-related quality of life in adults with cerebral palsy compared to the general population. Dev Med Child Neurol 2005; 47 (Suppl. 103): 29.
29. Lundberg O, Peck N. Sense of coherence, social structure and health. Evidence from a population survey in Sweden. Eur J Public Health 1995; 4: 252-57.
30. WHOQOL Group. Development of the WHOQOL: Rationale and current status. Int J Mental Health 1994; 23: 24-56.
31. Vaz Serra A, Canavarro MC, Simões MR, et al. Estudos psicométricos do instrumento de avaliação da Qualidade de Vida da Organização Mundial de Saúde (WHOQOL-Bref) para Português de Portugal. Psiquiatria Clínica 2006; 27 41-49.
32. McIntyre T, McIntyre S, Silvério J. Resposta de stress e recursos de coping nos enfermeiros. Análise Psicológica 1999; 17: 513-7.
33. Carter A, Marakovitz S, Sparrow S. Comprehensive psychological assessment: A developmental psychopathology approach for clinical and applied research. In: Cicchetti D, Cohen D, editors. Developmental Psychopathology: Theory and Method. New Jersey: John Wiley & Sons, 2006: 181-211.
34. Bent N, Tennant A, Swift T, Chamberlain MA. Team approach versus ad hoc health services for young people with physical disabilities: A retrospective cohort study. Lancet 2002; 360: 1280-86.
35. Hudsmith LE, Thorne SA. Transition of care from paediatric to adult services in cardiology. Arch Dis Child 2007; 92: 927-30.
36. Bolton-Maggs HB. Transition of care from paediatric to adult services in haematology. Arch Dis Child 2007; 92: 797-801.
37. Morgan DJ, Blackburn M, Bax M. Adults with spina bifida and/or hydrocephalus. Postgrad Med J 1995; 71: 17-21.
38. McDonagh JE. Transition of care from paediatric to adult rheumatology. Arch Dis Child 2007; 92: 802-07.
39. Viner R. Effective transition from paediatric to adult services. Hosp Med 2000; 61: 341-43.
40. Olsen DG, Swigonski NL. Transition to adulthood: The important role of the pediatrician. Pediatrics 2004; 113: E159-62.