Article

OBJECTIVES: To (1) determine the long-term trajectory of health-related quality
of life (HRQOL) for the dimensions of physical complaints and motor,
psychological, and social functioning for groups of individuals with cerebral
palsy (CP) aged 1 to 24 years; (2) assess the variability in HRQOL within
individuals with CP over time; (3) assess the variability in HRQOL between
individuals with CP; and (4) compare the HRQOL in individuals with CP to
reference data of typically developing individuals. DESIGN: Multicenter
prospective longitudinal study. SETTING: Rehabilitation departments of 3
university medical centers and various rehabilitation centers in The Netherlands.
PARTICIPANTS: Dutch individuals with CP (N=424; age, 1-24y). INTERVENTIONS: Not
applicable. MAIN OUTCOME MEASURES: The HRQOL dimensions of physical complaints
and motor, psychological, and social functioning. Each individual visited the
rehabilitation department for 3 or 4 measurements. The time between measurements
was 1 or 2 years. RESULTS: Individuals with CP experience an HRQOL that, on
average, remains fairly stable over time. Variability in HRQOL within individuals
with CP was similar to that within typically developing individuals. Variability
between individuals with CP could be explained by type of CP (motor functioning),
Gross Motor Function Classification System level (physical complaints and motor
and social functioning), and intellectual disability (physical complaints and
social functioning). Finally, individuals with CP experienced a lower HRQOL than
did typically developing individuals, especially for the dimensions of motor and
social functioning. CONCLUSIONS: Many changes take place in the psychosocial
development of the individual with CP, which accordingly change their
expectations and those of their caregivers, peers, and professionals. As a
result, perceived physical complaints and motor, psychological, and social
functioning remain fairly stable over many years.
CI - Copyright (c) 2014 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS