Abstract
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.
Keywords
List of abbreviations:
CP (cerebral palsy), GMFCS (Gross Motor Function Classification System), HRQOL (health-related quality of life), PERRIN (Pediatric Rehabilitation Research in the Netherlands), QOL (quality of life), SF-36 (Medical Outcomes Study 36-Item Short-Form Health Survey), TACQOL-CF (TNO-AZL Children's Quality of Life Child Form), TACQOL-PF (TNO-AZL Children's Quality of Life Parent Form), TAPQOL (TNO-AZL Preschool Children Quality of Life), TAPQOL-PF (TNO-AZL Preschool Children Quality of Life Parent Form), TNO-AZL (Netherlands Organisation for Applied Scientific Research-University Hospital Leiden)To read this article in full you will need to make a payment
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Article Info
Publication History
Published online: June 11, 2014
Footnotes
This research has been performed as part of the Pediatric Rehabilitation Research in The Netherlands+ (PERRIN+) research program.
Supported by the Stichting Rotterdams Kinderrevalidatie Fonds Adriaanstichting and Stichting Johanna KinderFonds (grant no. 2010/0040 ).
Disclosures: none.
Identification
Copyright
© 2014 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
