The Health and Quality of Life Outcomes Among Youth and Young Adults With Cerebral Palsy

Archives of Physical Medicine and Rehabilitation

Volumn 91, Issue 1, 2010, Pages 143-148

  Young, Nancy L ^a,b   Rochon, Trista G ^a   McCormick, Anna ^c   Law, Mary ^d   Wedge, John H ^b   Fehlings, Darcy ^e  

^a LAURENTIAN UNIVERSITY   (Canada)

^b HOSPITAL FOR SICK CHILDREN   (Canada)

^c CHILDREN S HOSPITAL OF EASTERN ONTARIO   (Canada)

^d MCMASTER UNIVERSITY   (Canada)

^e HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL   (Canada)

Author keywords

Adolescent; Cerebral palsy; Health status; Quality of life; Rehabilitation; Young adult

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CANADA; CEREBRAL PALSY; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; DISEASE SEVERITY; FEMALE; FOLLOW UP; GROUPS BY AGE; HEALTH CARE; HEALTH STATUS; HUMAN; LONGITUDINAL STUDY; MAJOR CLINICAL STUDY; MALE; MEDICAL LITERATURE; OUTCOME ASSESSMENT; PREDICTION; PREDICTOR VARIABLE; QUALITY OF LIFE; SCORING SYSTEM; SELF REPORT; SEX DIFFERENCE; WELLBEING;

ADOLESCENT; ADULT; AGE FACTORS; CEREBRAL PALSY; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH STATUS; HUMANS; MALE; QUALITY OF LIFE; SEVERITY OF ILLNESS INDEX; SEX FACTORS;

EID: 73049108161     PISSN: 00039993     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.apmr.2009.08.152     Document Type: Article

References (50)

1. Blum R.W. Transition to adult health care: setting the stage. J Adolesc Health 17 (1995) 3-5
2. Hutton J.L., Cooke T., and Pharoah P.O. Life expectancy in children with cerebral palsy. BMJ 309 (1994) 431-435
3. Strauss D.J., Shavelle R.M., and Anderson T.W. Life expectancy of children with cerebral palsy. Pediatr Neurol 18 (1998) 143-149
4. Hutton J., and Pharoah P. Life expectancy in severe cerebral palsy. Arch Dis Child 91 (2006) 254-258
5. Katz R. Life expectancy for children with cerebral palsy and mental retardation: implications for life care planning. NeuroRehabilitation 18 (2003) 261-270
6. Kemp B., and Mosqueda L. Aging with a disability (2004), Johns Hopkins U Pr, Baltimore
7. 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
8. 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
9. Donkervoort M., Roebroeck M., Wiegerink D., van der Heijden-Maessen H., and Stam H. Determinants of functioning of adolescents and young adults with cerebral palsy. Disabil Rehabil 29 (2007) 453-463
10. Krakovsky G., Huth M., Lin L., and Levin R. Functional changes in children, adolescents, and young adults with cerebral palsy. Res Dev Disabil 28 (2007) 331-340
11. 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
12. Hilberink S., Roebroeck M., Nieuwstraten W., Jalink L., Verheijden J., and Stam H. Health issues in young adults with cerebral palsy: towards a life-span perspective. J Rehabil Med 39 (2007) 605-611
13. Strauss D., Brooks J., Rosenbloom L., and Shavelle R. Life expectancy in cerebral palsy: an update. Dev Med Child Neurol 50 (2008) 487-493
14. Olmsted N.J. Evaluating the health status of young adults with cerebral palsy and spina bifida. Masters of Science Thesis (2004), University of Toronto, Toronto
15. Mittmann N., Trakas K., Risebrough N., and Liu B.A. Utility scores for chronic conditions in a community-dwelling population. Pharmacoeconomics 15 (1999) 369-376
16. 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
17. Binks J., Barden W., Burke T., and Young N. 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 88 (2007) 1064-1073
18. Young N. The transition to adulthood for children with cerebral palsy. J Pediatr Orthop 27 (2007) 476-479
19. Palisano R., Rosenbaum P., Walter S., Russell D., Wood E., and Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 39 (1997) 214-223
20. Dillman D.A. Mail and Internet surveys: the tailored design method. 2nd ed. (2000), John Wiley, New York
21. Young N.L., McCormick A., Mills W.A., 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
22. World Health Organization. International classification of functioning, disability and health (2001), World Health Organization, Geneva
23. In: Spilker B. (Ed). Quality of life assessments in clinical trials (1990), Raven Pr, Ltd, New York
24. Spitzer W.O. State of science 1986: quality of life and functional status as target variables for research. J Chronic Dis 40 (1987) 465-471
25. Sprangers M.A., and Aaronson N.K. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 45 (1992) 743-760
26. Bullinger M. Quality of life: definition, conceptualization and implications-a methodologist's view. Theor Surg 6 (1991) 143-149
27. Wilson I.B., and Cleary P. Linking clinical variables with health-related quality of life. JAMA 273 (1995) 59-65
28. Kane R.A., and Kane R.L. Uses and abuses of measurement in long-term care. In: Kane R.A., and Kane R.L. (Eds). Assessing the elderly: a practical guide to measurement (1981), Lexington Books, Toronto 1-23
29. Nunnally J.C., and Bernstein I.H. Psychometric theory. 3rd ed. (1994), McGraw-Hill, New York
30. Erickson P., Kendall E.A., Anderson J.P., and Kaplan R.M. Using composite health status measures to assess the nation's health. Med Care 27 3 Suppl (1989) S66-S76
31. Boyle M.H., Furlong W., Feeny D., Torrance G.W., and Hatcher J. Reliability of the Health Utilities Index-Mark III used in the 1991 Cycle 6 Canadian General Social Survey Health Questionnaire. Qual Life Res 4 (1995) 249-257
32. Feeny D., Furlong W., Boyle M., and Torrance G.W. Multi-attribute health status classification systems. Health Utilities Index. Pharmacoeconomics 7 (1995) 490-502
33. Hawthorne G., Richardson J., and Day N.A. A comparison of the Assessment of Quality of Life (AQoL) with four other generic utility instruments. Ann Med 33 (2001) 358-370
34. Hawthorne G., Richardson J., and Osborne R. The Assessment of Quality of Life (AQoL) instrument: a psychometric measure of health-related quality of life. Qual Life Res 8 (1999) 209-224
35. Feeny D., Torrance G.W., and Furlong W. Health Utilities Index. In: Spilker B. (Ed). Quality of life and pharmacoeconomics in clinical trials. 2nd ed. (1996), Lippincott-Raven Publishers, Philadelphia 239-252
36. Feeny D., Furlong W., Torrance G.W., et al. Multiattribute and single-attribute utility functions for the Health Utilities Index Mark 3 system. Med Care 40 (2002) 113-128
37. Kopec J.A., Schultz S.E., Goel V., and Williams J.I. Can the health utilities index measure change?. Med Care 39 (2001) 562-574
38. Bruce B., and Fries J.F. The Health Assessment Questionnaire (HAQ). Clin Exp Rheumatol 23 (2005) 14-18
39. Bruce B., and Fries J.F. The Stanford Health Assessment Questionnaire: a review of its history, issues, progress, and documentation. J Rheumatol 30 (2003) 167-178
40. Strauss D., Ojdana K., Shavelle R., and Rosenbloom L. Decline in function and life expectency of older persons with cerebral palsy. Neurorehabilitation 19 (2004) 69-78
41. Liptak G.S. Health and well being of adults with cerebral palsy. Curr Opin Neurol 21 (2008) 136-142
42. Young N.L., Gilbert T.K., McCormick A., et al. Youth and young adults with cerebral palsy: their use of physician and hospital services. Arch Phys Med Rehabil 88 (2007) 696-702
43. Cremeens J., Eiser C., and Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 4 (2006) 58
44. 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
45. Rosenbaum P.L., Livingston M.H., Palisano R.J., Galuppi B.E., and Russell D.J. Quality of life and health-related quality of life of adolescents with cerebral palsy. Dev Med Child Neurol 49 (2007) 516-521
46. Westbom L., Hagglund G., and Nordmark E. Cerebral palsy in a total population of 4-11 year olds in southern Sweden: prevalence and distribution according to different CP classification systems. BioMed Central Pediatrics 7 (2007) 41
47. Statistics Canada. Self-rated health, by age group and sex, household population aged 12 and over, Canada, provinces, territories, health regions (June 2005 boundaries) and peer groups, every 2 years (2006), Statistics Canada, Ottawa
48. Saigal S., Rosenbaum P.L., Feeny D., et al. Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics 105 3 Pt 1 (2000) 569-574
49. Schwartz C.E., Andresen E.M., Nosek M.A., Krahn G.L., and RRTC Expert Panel on Health Status Measurement. Response shift theory: important implications for measuring quality of life in people with disability. Arch Phys Med Rehabil 88 (2007) 529-536
50. Bjornson K., Belza B., Kartin D., Logsdon R., McLaughlin J., and Thompson E.A. The relationship of physical activity to health status and quality of life in cerebral palsy. Pediatr Phys Ther 20 (2008) 247-253