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

      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)
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      References

        • United Nations
        Convention on the rights of the child.
        United Nations, New York1989
        • World Health Organization
        The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization.
        Soc Sci Med. 1995; 41: 1403-1409
        • Waters E.
        • Davis E.
        • Ronen G.M.
        • Rosenbaum P.
        • Livingston M.
        • Saigal S.
        Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument.
        Dev Med Child Neurol. 2009; 51: 660-669
        • Livingston M.H.
        • Rosenbaum P.L.
        • Russell D.J.
        • Palisano R.J.
        Quality of life among adolescents with cerebral palsy: what does the literature tell us?.
        Dev Med Child Neurol. 2007; 49: 225-231
        • Raat H.
        • Mohangoo A.D.
        • Grootenhuis M.A.
        Pediatric health-related quality of life questionnaires in clinical trials.
        Curr Opin Allergy Clin Immunol. 2006; 6: 180-185
        • Rosenbaum P.L.
        • Livingston M.H.
        • Palisano R.J.
        • Galuppi B.E.
        • Russell D.J.
        Quality of life and health-related quality of life of adolescents with cerebral palsy.
        Dev Med Child Neurol. 2007; 49: 516-521
        • Odding E.
        • Roebroeck M.E.
        • Stam H.J.
        The epidemiology of cerebral palsy: incidence, impairments and risk factors.
        Disabil Rehabil. 2006; 28: 183-191
        • Surveillance of Cerebral Palsy in Europe
        Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers. Surveillance of Cerebral Palsy in Europe (SCPE).
        Dev Med Child Neurol. 2000; 42: 816-824
        • Strauss D.
        • Brooks J.
        • Rosenbloom L.
        • Shavelle R.
        Life expectancy in cerebral palsy: an update.
        Dev Med Child Neurol. 2008; 50: 487-493
        • Gorter J.W.
        • Stewart D.
        • Woodbury-Smith M.
        Youth in transition: care, health and development.
        Child Care Health Dev. 2011; 37: 757-763
        • van der Slot W.M.
        • Nieuwenhuijsen C.
        • van den Berg-Emons R.J.
        • et al.
        Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy.
        J Rehabil Med. 2010; 42: 528-535
        • Majnemer A.
        • Shevell M.
        • Rosenbaum P.
        • Law M.
        • Poulin C.
        Determinants of life quality in school-age children with cerebral palsy.
        J Pediatr. 2007; 151 (475.e1-3): 470-475
        • Vargus-Adams J.
        Health-related quality of life in childhood cerebral palsy.
        Arch Phys Med Rehabil. 2005; 86: 940-945
        • Alsem M.W.
        • Ketelaar M.
        • Verhoef M.
        The course of health-related quality of life of preschool children with cerebral palsy.
        Disabil Rehabil. 2013; 35: 686-693
        • Janssen C.G.
        • Voorman J.M.
        • Becher J.G.
        • Dallmeijer A.J.
        • Schuengel C.
        Course of health-related quality of life in 9-16-year-old children with cerebral palsy: associations with gross motor abilities and mental health.
        Disabil Rehabil. 2010; 32: 344-351
        • Vargus-Adams J.
        Longitudinal use of the Child Health Questionnaire in childhood cerebral palsy.
        Dev Med Child Neurol. 2006; 48: 343-347
        • Donkervoort M.
        • Roebroeck M.
        • Wiegerink D.
        • van der Heijden-Maessen H.
        • Stam H.
        Transition Research Group South West Netherlands. Determinants of functioning of adolescents and young adults with cerebral palsy.
        Disabil Rehabil. 2007; 29: 453-463
        • Smits D.W.
        • Ketelaar M.
        • Gorter J.W.
        • et al.
        Development of daily activities in school-age children with cerebral palsy.
        Res Dev Disabil. 2011; 32: 222-234
        • Smits D.W.
        • Gorter J.W.
        • Hanna S.E.
        • et al.
        Longitudinal development of gross motor function among Dutch children and youth with cerebral palsy: an investigation of motor growth curves.
        Dev Med Child Neurol. 2013; 55: 378-384
        • Vos R.C.
        • Becher J.G.
        • Ketelaar M.
        • et al.
        Developmental trajectories of daily activities in children and adolescents with cerebral palsy.
        Pediatrics. 2013; 132: e915-e923
        • Tan S.S.
        • Wiegerink D.
        • Ketelaar M.
        • et al.
        Developmental trajectories of social participation in individuals with cerebral palsy.
        Dev Med Child Neurol. 2014; 56: 370-377
        • Donkervoort M.
        • Wiegerink D.J.
        • van Meeteren J.
        • Stam H.J.
        • Roebroeck M.E.
        Transition Research Group South West Netherlands. Transition to adulthood: validation of the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence.
        Dev Med Child Neurol. 2009; 51: 53-62
        • Fekkes M.
        • Theunissen N.C.
        • Brugman E.
        • et al.
        Development and psychometric evaluation of the TAPQOL: a health-related quality of life instrument for 1-5-year-old children.
        Qual Life Res. 2000; 9: 961-972
        • Verrips G.H.
        • Vogels A.G.
        • Koopman H.M.
        • et al.
        Measuring health-related quality of life in a child population.
        Eur J Public Health. 1999; 9: 188-193
        • Aaronson N.K.
        • Muller M.
        • Cohen P.D.
        • et al.
        Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations.
        J Clin Epidemiol. 1998; 51: 1055-1068
        • Bunge E.M.
        • Essink-Bot M.L.
        • Kobussen M.P.
        • van Suijlekom-Smit L.W.
        • Moll H.A.
        • Raat H.
        Reliability and validity of health status measurement by the TAPQOL.
        Arch Dis Child. 2005; 90: 351-358
      1. van der Zee KI, Sanderman R. Measuring the general health state using the RAND-36, a manual. Groningen (The Netherlands): Northern Center for Health Queries (NCG), University of Groningen 1993; NCG-series measurement instruments; 3:1-1-28.

        • Palisano R.J.
        • Hanna S.E.
        • Rosenbaum P.L.
        • et al.
        Validation of a model of gross motor function for children with cerebral palsy.
        Phys Ther. 2000; 80: 974-985
      2. TNO Prevention and Health. Vragenlijsten kwaliteit van leven. Available at: http://www.tno.nl/downloads/vragenlijsten_01032012.pdf. Accessed May 24, 2012.

        • Dickinson H.O.
        • Parkinson K.N.
        • Ravens-Sieberer U.
        • et al.
        Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study.
        Lancet. 2007; 369: 2171-2178
        • Vogels T.
        • Verrips G.H.
        • Verloove-Vanhorick S.P.
        • et al.
        Measuring health-related quality of life in children: the development of the TACQOL parent form.
        Qual Life Res. 1998; 7: 457-465
        • Livingston M.H.
        • Rosenbaum P.L.
        Adolescents with cerebral palsy: stability in measurement of quality of life and health-related quality of life over 1 year.
        Dev Med Child Neurol. 2008; 50: 696-701
        • Barge-Schaapveld D.Q.
        • Nicolson N.A.
        • Berkhof J.
        • deVries M.W.
        Quality of life in depression: daily life determinants and variability.
        Psychiatry Res. 1999; 88: 173-189
        • Arnaud C.
        • White-Koning M.
        • Michelsen S.I.
        • et al.
        Parent-reported quality of life of children with cerebral palsy in Europe.
        Pediatrics. 2008; 121: 54-64
        • White-Koning M.
        • Arnaud C.
        • Bourdet-Loubere S.
        • Bazex H.
        • Colver A.
        • Grandjean H.
        Subjective quality of life in children with intellectual impairment–how can it be assessed?.
        Dev Med Child Neurol. 2005; 47: 281-285