Health and well being of adults with cerebral palsy

Current Opinion in Neurology

Volumn 21, Issue 2, 2008, Pages 136-142

  Liptak, Gregory S ^a  

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

Author keywords

Adults; Cerebral palsy; Disability evaluation; Health status indicators; Transition

Indexed keywords

CEREBRAL PALSY; COGNITION; COMORBIDITY; DAILY LIFE ACTIVITY; DISABILITY; DISEASE SEVERITY; FUNCTIONAL ASSESSMENT; FUNCTIONAL DISEASE; HEALTH; HEALTH CARE SYSTEM; HEALTH SERVICE; HEALTH STATUS; HUMAN; INTERVENTION STUDY; MORTALITY; PAIN; PATIENT PARTICIPATION; QUALITY OF LIFE; REVIEW; RISK FACTOR; SURVIVAL; WELLBEING;

ACTIVITIES OF DAILY LIVING; ADULT; CEREBRAL PALSY; COMORBIDITY; DISABILITY EVALUATION; HEALTH SERVICES; HEALTH STATUS; HUMANS; INTERPERSONAL RELATIONS; PAIN; QUALITY OF LIFE; SOCIAL SUPPORT;

EID: 43149104418     PISSN: 13507540     EISSN: None     Source Type: Journal    
DOI: 10.1097/WCO.0b013e3282f6a499     Document Type: Review

References (63)

1. Kim KM, Canda ER. Toward a holistic view of health and health promotion in social work with people with disabilities. J Soc Work Disab Rehabil 2006; 5:49-67.
2. World Health Organization. The first ten years of the World Health Organization. Geneva: WHO; 1958.
3. Evans RG, Stoddart GL. Producing health, consuming healthcare. In: Evans RG, Barer ML, Marmor TR, editors. Why are some people healthy and others not? The determinants of health of populations. New York: Aldine de Gruyter; 2000. pp. 27-64.
4. World Health Organization. International classification of functioning, disability and health. 2001. http://www.who.int/classifications/icf/site/ icftemplate.cfm. [Accessed 7 November 2007].
5. Brown B, Moore K, Bzostek S. Child trends. A portrait of well being in early adulthood. October 2003. www.childtrends.org. [Accessed 7 November 2007].
6. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl 2007; 109:8-14. This article reexamines the definition of cerebral palsy and the criteria necessary to make the proper diagnosis.
7. Law M, King G, King S, et al. Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol 2006; 48:337-342.
8. Blair E, Watson L, Badawi N, Stanley FJ. Life expectancy among people with cerebral palsy in Western Australia. Dev Med Child Neurol 2001; 43:508-515.
9. Strauss D, Shavelle R, Reynolds R, et al. Survival in cerebral palsy in the last 20 years: signs of improvement? Dev Med Child Neurol 2007; 49:86-92.
10. Hutton JL, Pharoah PO. Life expectancy in severe cerebral palsy. Arch Dis Child 2006; 91:254-258.
11. Hemming K, Hutton JL, Pharoah PO. Long-term survival for a cohort of adults with cerebral palsy. Dev Med Child Neurol 2006; 48:90-95.
12. National Center for Health Statistics. Health, United States, 2006 with chartbook on trends in the health of americans. Hyattsville: National Center for Health Statistics; 2006. http://www.cdc.gov/nchs/data/hus/hus06.pdf. [Accessed 4 November 2007].
13. Janicki MP, Davidson PW, Henderson CM, et al. Health characteristics and health services utilization in older adults with intellectual disability living in community residences. J Intellect Disabil Res 2002; 46 (Pt 4):287-298.
14. Wang KY, Hsieh K, Heller T, et al. Carer reports of health status among adults with intellectual/developmental disabilities in Taiwan living at home and in institutions. J Intellect Disabil Res 2007; 51 (Pt 3):173-183.
15. Klingbeil H, Baer HR, Wilson PE. Aging with a disability. Arch Phys Med Rehabil 2004; 85 (7 Suppl 3):S68-S73.
16. Turk MA, Scandale J, Rosenbaum PF, Weber RJ. The health of women with cerebral palsy. Phys Med Rehabil Clin N Am 2001; 12:153-168.
17. 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.
18. Henderson RC, Grossberg RI, Matuszewski J, et al. Growth and nutritional status in residential center versus home-living children and adolescents with quadriplegic cerebral palsy. J Pediatr 2007; 151:161-166.
19. Day SM, Strauss DJ, Vachon PJ, et al. Growth patterns in a population of children and adolescents with cerebral palsy. Dev Med Child Neurol 2007; 49:167-171.
20. Ferrang TM, Johnson RK, Ferrara MS. Dietary and anthropometric assessment of adults with cerebral palsy. J Am Diet Assoc 1992; 92:1083-1086.
21. Bax MC, Smyth DP, Thomas AP. Healthcare of physically handicapped young adults. Br Med J (Clin Res Ed) 1988; 296:1153-1155.
22. Schwartz L, Engel JM, Jensen MP. Pain in persons with cerebral palsy. Arch Phys Med Rehabil 1999; 80:1243-1246.
23. Engel JM, Jensen MP, Schwartz L. Coping with chronic pain associated with cerebral palsy. Occup Ther Int 2006; 13:224-233.
24. Jahnsen R, Villien L, Aamodt G, et al. Musculoskeletal pain in adults with cerebral palsy compared with the general population. J Rehabil Med 2004; 36:78-84.
25. Donkervoort M, Roebroeck M, Wiegerink D, et al. Determinants of functioning of adolescents and young adults with cerebral palsy. Disabil Rehabil 2007; 29:453-463. In this study, adults with CP were evaluated using the World Health Organization criteria that include activities as well as participation. They found that a significant number of adolescents and young adults with CP without severe learning disabilities had restrictions in daily activities and social participation. These problems were associated with lower level of gross motor functioning, low level of education and younger age.
26. Cho SR, Park ES, Park CI, Na SI. Characteristics of psychosexual functioning in adults with cerebral palsy. Clin Rehabil 2004; 18:423-429.
27. •] these authors found that levels of everyday physical activity and community participation in adults with hemiplegic CP were comparable to levels in healthy comparison subjects. Thus, the type of CP is a major factor in determining the levels of activity and participation.
28. Krakovsky G, Huth MM, Lin L, Levin RS. Functional changes in children, adolescents, and young adults with cerebral palsy. Res Dev Disabil 2007; 28:331-340. This study reported a significant decrease in activities of daily living and mobility in adolescents and adults with CP as they grew older. It also found a significant percentage with depression and anxiety. Whether or not these deteriorations can be prevented remains to be seen.
29. Bottos M, Feliciangeli A, Sciuto L, et al. Functional status of adults with cerebral palsy and implications for treatment of children. Dev Med Child Neurol 2001; 43:516-528.
30. O'Grady RS, Crain LS, Kohn J. The prediction of long-term functional outcomes of children with cerebral palsy. Dev Med Child Neurol 1995; 37:997-1005.
31. Balandin S, Hemsley B, Sigafoos J, Green V. Communicating with nurses: the experiences of 10 adults with cerebral palsy and complex communication needs. Appl Nurs Res 2007; 20:56-62.
32. Stevenson CJ, Pharoah PO, Stevenson R. Cerebral palsy: the transition from youth to adulthood. Dev Med Child Neurol 1997; 39:336-342.
33. van der Dussen L, Nieuwstraten W, Roebroeck M, Stam HJ. Functional level of young adults with cerebral palsy. Clin Rehabil 2001; 15:84-91.
34. Michelsen SI, Uldall P, Hansen T, Madsen M. Social integration of adults with cerebral palsy. Dev Med Child Neurol 2006; 48:643-649.
35. Wood E, Rosenbaum P. The gross motor function classification system for cerebral palsy: a study of reliability and stability over time. Dev Med Child Neurol 2000; 42:292-296.
36. Heller T, Factor AR, Hahn JE. Residential transitions from nursing homes for adults with cerebral palsy. Disabil Rehabil 1999; 21 (5-6):277-283.
37. Castle K, Imms C, Howie L. Being in pain: a phenomenological study of young people with cerebral palsy. Dev Med Child Neurol 2007; 49:445-449.
38. Wiegerink DJ, Roebroeck ME, Donkervoort M, et al. Social and sexual relationships of adolescents and young adults with cerebral palsy: a review. Clin Rehabil 2006; 20:1023-1031.
39. Michelsen SI, Uldall P, Kejs AM, Madsen M. Education and employment prospects in cerebral palsy. Dev Med Child Neurol 2005; 47:511-517.
40. Murphy KP, Molnar GE, Lankasky K. Employment and social issues in adults with cerebral palsy. Arch Phys Med Rehabil 2000; 81:807-811.
41. Richard V. Burkhauser RV, Houtenville AJ. A brief discussion of the employment of people with disabilities and the definition of disabilities. Cornell University Rehabilitation Research and Training Center. http://www.ilr.cornell.edu/extension/files/download/Brief%20- %20employment%20and%20definitiion.pdf. [Accessed 4 November 2007].
42. Livingston MH, Rosenbaum PL, Russell DJ, Palisano RJ. Quality of life among adolescents with cerebral palsy: what does the literature tell us? Dev Med Child Neurol 2007; 49:225-231.
43. Tobimatsu Y, Nakamura R. Retrospective study of factors affecting employability of individuals with cerebral palsy in Japan. Tohoku J Exp Med 2000; 192:291-299.
44. Fuhrer MJ. Subjectifying quality of life as a medical rehabilitation outcome: review. Disabil Rehabil 2000; 22:481-489.
45. Dijkers M. Quality of life after spinal cord injury: a meta analysis of the effects of disablement. J Spinal Cord Injury Med 1997; 35:829-840.
46. Young NL. The transition to adulthood for children with cerebral palsy: what do we know about their healthcare needs? J Pediatr Orthop 2007; 27:476-479. This paper reviews the orthopaedic needs of adults with CP and discusses the transition to adult-oriented services. Five factors, preparation, flexible timing, care coordination, transition clinic visits, and interested adult-centered healthcare providers optimize transition to care.
47. Ng SY, Dinesh SK, Tay SK, Lee EH. Decreased access to healthcare and social isolation among young adults with cerebral palsy after leaving school. J Orthop Surg (Hong Kong) 2003; 11:80-89.
48. Beatty PW, Hagglund KJ, Neri MT, et al. Access to healthcare services among people with chronic or disabling conditions: patterns and predictors. Arch Phys Med Rehabil 2003; 84:1417-1425.
49. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disabil Rehabil 2003; 25:487-490.
50. Darrah J, Magil-Evans J, Adkins R. How well are we doing? Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery. Disabil Rehabil 2002; 24:542-549.
51. Buzio A, Morgan J, Blount D. The experiences of adults with cerebral palsy during periods of hospitalisation. Aust J Adv Nurs 2002; 19:8-14.
52. Engel JM, Kartin D, Jensen MP. Pain treatment in persons with cerebral palsy: frequency and helpfulness. Am J Phys Med Rehabil 2002; 81:291-296.
53. Becker H, Stuifbergen A, Tinkle M. Reproductive healthcare experiences of women with physical disabilities: a qualitative study. Arch Phys Med Rehabil 1997; 78 (12 Suppl 5):S26-S33.
54. Sulkes SB. MD's DD BASICS: identifying common problems and preventing secondary disabilities. Pediatr Ann 1995; 24:245-248.
55. Damiano DL. Activity, activity, activity: rethinking our physical therapy approach to cerebral palsy. Phys Ther 2006; 86:1534-1540.
56. Taylor NF, Dodd KJ, Larkin H. Adults with cerebral palsy benefit from participating in a strength training programme at a community gymnasium. Disabil Rehabil 2004; 26:1128-1134.
57. Liptak GS. Complementary and alternative therapies for cerebral palsy. Ment Retard Dev Disabil Res Rev 2005; 11:156-163.
58. Hallum A. Disability and the transition to adulthood: issues for the disabled child, the family, and the pediatrician. Curr Probl Pediatr 1995; 25:12-50.
59. Pilling DS. Early employment careers of people with disabilities in the National Child Development Study Work. J Prev Assess Rehabil 2002; 18:75-87.
60. Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered healthcare? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil 2007; 88:1064-1073. This article reviews the published literature on transitions to adult healthcare and discusses the factors that support successful transitions.
61. Australian Institute of Health and Welfare (AIHW). Therapy and equipment needs of people with cerebral palsy and like disabilities in Australia. Disability Series. Cat. no. DIS 49. Canberra: AIHW; 2006. This is an excellent review of the therapeutic needs of people with CP.
62. Wehman PH, Revell WG, Kregel J, et al. Supported employment: an alternative model for vocational rehabilitation of persons with severe neurologic, psychiatric, or physical disability. Arch Phys Med Rehabil 1991; 72:101-105.
63. Wynn K, Stewart D, Law M, et al. Creating connections: a community capacity building project with parents and youth with disabilities in transition to adulthood. Phys Occup Ther Pediatr 2006; 26:89-103.