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

Abstract

Young NL, Rochon TG, McCormick A, Law M, Wedge JH, Fehlings D. The health and quality of life outcomes among youth and young adults with cerebral palsy.

Objectives

To describe the health and quality of life (QoL) of youth and young adults who have cerebral palsy (CP), and to assess the impact of 3 key factors (severity, age, and sex) on these outcomes.

Design

Cross-sectional survey.

Setting

Participants were identified from 6 children's treatment centers in Ontario.

Participants

The sample of participants (N=199) included youth (n=129; age, 13–17y) and adults (n=70; age, 23–33y) with a broad range of severity: 35% mild, 19% moderate, and 47% severe.

Intervention

Not applicable.

Main Outcome Measures

Health Utilities Index (HUI3), Assessment of Quality of Life (AQoL), and Self-Rated Health (SRH).

Results

SRH was reported to be excellent or very good by 57% of youth and 46% of adults. Mean HUI3 scores were .30 for youth and .31 for adults. Mean AQoL scores were .28 for youth and adults. Severity of CP in childhood predicted 55% of the variance in HUI3 scores and 45% of the variance in AQoL scores. Age and sex were not significant predictors of health or QoL.

Conclusions

The observed health and QoL scores were much lower than those previously reported in the literature. This is likely a result of the inclusion of those with severe CP. The scores for youth were similar to those for adults and suggest that health and QoL outcomes were relatively stable across the transition to adulthood. Youth and adults with CP have limited health status and will require health care support throughout their lives to help them optimize their well being. Longitudinal follow-up studies are essential to understand better the patterns of health in this population over time.

Key Words: Adolescent, Cerebral palsy, Health status, Quality of life, Rehabilitation, Young adult

List of Abbreviations: AQoL, Assessment of Quality of Life, CP, cerebral palsy, GMFCS, Gross Motor Function Classification System, HAQ, Health Assessment Questionnaire, HUI3, Health Utilities Index Mark III, QoL, quality of life, SRH, Self-Rated Health

a School of Rural and Northern Health, Laurentian University, Sudbury, Ontario, Canada

b Department of Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada

c The Children's Hospital for Eastern Ontario and Ottawa Children's Treatment Centre, Ottawa, Ontario, Canada

d School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada

e Bloorview Kids Rehab, Toronto, Ontario, Canada

Reprint requests to Nancy L. Young, PhD, Laurentian University, 935 Ramsey Lake Rd, Sudbury, ON, Canada, P3E 2C6

Supported by the Bloorview Children's Hospital Foundation and the Canadian Institutes for Health Research. Young is supported by a Canada Research Chair in Rural and Northern Children's Health from the Canadian Institutes for Health Research.

No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.

PII: S0003-9993(09)00773-4

doi:10.1016/j.apmr.2009.08.152

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