Adolescents with cerebral palsy: stability in measurement of quality of life and health-related quality of life over 1 year.

Abstract:

:This study assessed stability of measurement of quality of life (QOL) and health-related quality of life (HRQOL) over the course of 1 year among 185 adolescents (mean age 16y, SD 1 y 9 mo) with cerebral palsy (CP). Participants were classified on the Gross Motor Function Classification System as level I (n=55), II (n=30), III (n=27), IV (n=46), or V (n=27). QOL was assessed by self- (n=125) or proxy-report (n=60) with the Short Version of the Quality of Life Instrument for People with Developmental Disabilities (QOL Instrument), which describes domains of Being, Belonging, and Becoming. HRQOL was captured through parent proxy-reports with the Health Utilities Index Mark 3 (HUI3). Generalizability coefficients (G) for domain and Overall QOL scores on the QOL Instrument ranged from 0.50 to 0.73, indicating that between 50 and 73% of the variance was stable over 1 year. Stability on the HUI3 was excellent (G>0.90) for ambulation and overall utility scores; moderate (G=0.70-0.90) for speech, vision, dexterity, cognition, and hearing; and low for pain (G=0.48) and emotion (G=0.24). Correlations between scores on the two instruments were moderate even when adjustments were made for the lack of perfect stability over 1 year. This supports the notion that QOL and HRQOL are different aspects of life experience among adolescents with CP.

journal_name

Dev Med Child Neurol

authors

Livingston MH,Rosenbaum PL

doi

10.1111/j.1469-8749.2008.03053.x

subject

Has Abstract

pub_date

2008-09-01 00:00:00

pages

696-701

issue

9

eissn

0012-1622

issn

1469-8749

pii

DMCN3053

journal_volume

50

pub_type

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