Long-Term Trajectories of Health-Related Quality of Life in Individuals With Cerebral Palsy: A Multicenter Longitudinal Study

Siok Swan Tan*, Jetty van Meeteren, Marjolijn Ketelaar, Carlo Schuengel, Heelen Reinders - Messelink, Hein Raat, Annet J. Dallmeijer, Marij E. Roebroeck, PERRIN Study Grp

*Bijbehorende auteur voor dit werk

    OnderzoeksoutputAcademicpeer review

    21 Citaten (Scopus)


    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. (C) 2014 by the American Congress of Rehabilitation Medicine

    Originele taal-2English
    Pagina's (van-tot)2029-2039
    Aantal pagina's11
    TijdschriftArchives of Physical Medicine and Rehabilitation
    Nummer van het tijdschrift11
    StatusPublished - nov.-2014

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