Abstract
SummaryBackgroundChildren with cerebral palsy who can self-report have similar quality of life (QoL) to their able-bodied peers. Is this similarity also found in adolescence? We examined how self-reported QoL of adolescents with cerebral palsy varies with impairment and compares with the general population, and how factors in childhood predict adolescent QoL.MethodsWe report QoL outcomes in a longitudinal follow-up and cross-sectional analysis of individuals included in the SPARCLE1 (childhood) and SPARCLE2 (adolescent) studies. In 2004 (SPARCLE1), a cohort of 818 children aged 8–12 years were randomly selected from population-based cerebral palsy registers in nine European regions. We gathered data from 500 participants about QoL with KIDSCREEN (ten domains); frequency of pain; child psychological problems (Strengths and Difficulties Questionnaire); and parenting stress (Parenting Stress Index). At follow-up in 2009 (SPARCLE2), 355 (71%) adolescents aged 13–17 years remained in the study and self-reported QoL (longitudinal sample). 76 additional adolescents self-reported QoL in 2009, providing data for 431 adolescents in the cross-sectional sample. Researchers gathered data at home visits. We compared QoL against matched controls in the general population. We used multivariable regression to relate QoL of adolescents with cerebral palsy to impairments (cross-sectional analysis) and to childhood QoL, pain, psychological problems, and parenting stress (longitudinal analysis).FindingsSeverity of impairment was significantly associated (p<0·01) with reduced adolescent QoL on only three domains (Moods and emotions, Autonomy, and Social support and peers); average differences in QoL between the least and most able groups were generally less than 0·5 SD. Adolescents with cerebral palsy had significantly lower QoL than did those in the general population in only one domain (Social support and peers; mean difference −2·7 [0·25 SD], 95% CI −4·3 to −1·4). Pain in childhood or adolescence was strongly associated with low adolescent QoL on eight domains. Childhood QoL was a consistent predictor of adolescent QoL. Child psychological problems and parenting stress in childhood or their worsening between childhood and adolescence predicted only small reductions in adolescent QoL.InterpretationIndividual and societal attitudes should be affected by the similarity of the QoL of adolescents with and without cerebral palsy. Adolescents with cerebral palsy need particular help to maintain and develop peer relationships. Interventions in childhood to alleviate psychological difficulties, parenting stress, and especially pain, are justified for their intrinsic value and for their longer term effect on adolescent QoL.FundingSPARCLE1 was funded by the European Union Research Framework 5 Program (grant number QLG5-CT-2002-00636), the German Ministry of Health GRR-58640-2/14, and the German Foundation for the Disabled Child. SPARCLE2 was funded by: Wellcome Trust WT086315 A1A (UK and Ireland); Medical Faculty of the University of Lübeck E40-2009 and E26-2010 (Germany); CNSA, INSERM, MiRe–DREES, and IRESP (France); Ludvig and Sara Elsass Foundation, The Spastics Society and Vanforefonden (Denmark); Cooperativa Sociale “Gli Anni in Tasca” and Fondazione Carivit, Viterbo (Italy); Göteborg University—Riksforbundet for Rorelsehindrade Barn och Ungdomar and the Folke Bernadotte Foundation (Sweden).
Highlights
WHO defines quality of life (QoL) as “the individual’s perception of their position in life in the context of the culture and value system in which they live, and in relation to their goals, expectations, standards, and concerns”.1 QoL is subjective and should be self-reported whenever possible
We report a longitudinal analysis in which we assess childhood factors that are amenable to intervention and known to be associated with lower QoL in childhood:[3,12] pain, psychological problems, and parenting stress
The cross-sectional sample was composed of these 355 adolescents and an additional 34 adolescents who had self-reported their QoL in SPARCLE2 but not in SPARCLE1 and 42 adolescents who had not participated in but were eligible for SPARCLE1
Summary
WHO defines quality of life (QoL) as “the individual’s perception of their position in life in the context of the culture and value system in which they live, and in relation to their goals, expectations, standards, and concerns”.1 QoL is subjective and should be self-reported whenever possible. WHO defines quality of life (QoL) as “the individual’s perception of their position in life in the context of the culture and value system in which they live, and in relation to their goals, expectations, standards, and concerns”.1. QoL is subjective and should be self-reported whenever possible. Promotion of a good QoL is important for all but might be neglected in young people with disabilities due to an emphasis on trying to remedy their impairments. Young people with cerebral palsy are often studied as exemplars of children with disabilities because its severity, patterns of motor involvement, and associated impairments, such as communication, intellectual ability, and epilepsy, vary widely and persist across the life course. Prevalence of cerebral palsy has remained stable for the past 40 years at 2–3 per 1000 livebirths,[2] in countries where accurate data are available.
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