1. Compared to their able-bodied peers, adolescents with CP reported worse QoL in the social support domain, but better QoL in the domains of self-perception, moods and emotions, relationships with parents, autonomy, and school life.
2. Lower QoL was strongly associated with childhood pain for adolescents with CP. A focus on childhood and adolescent pain alleviation could be justified both for its inherent value and due to long-term effect on adolescent QoL.
Evidence Rating Level: 2 (Good)
Study Rundown: QoL is important to emphasize, but may be neglected in young people with disabilities. CP, a disease characterized by differing patterns of severity involving communication, epilepsy, and motor involvement, is often studied as a primary example of a disability in young people. This study assessed how self-reported QoL measures in adolescents with CP correlates with impairment, how QoL in adolescents with CP compares to QoL in the general population, and how childhood factors in CP predict adolescent QoL.
The results showed that the number of seizures in the previous year, walking ability, and IQ<70 were found to correlate to lower QoL measures in the domains of moods and emotions, autonomy, and social support, respectively. Compared to the general population, adolescents with CP reported worse QoL in the social support domain, but better QoL in the domains of self-perception, moods and emotions, relationships with parents, autonomy, and school life. Adolescent QoL had strong associations with pain, but mild associations with psychological problems and parenting stress. This study was the first to follow QoL from childhood to adolescence in young people with CP. Differential non-response of self-reported data could have impacted validity of this study, though attempts to minimize bias were made. The authors suggested that childhood interventions may have a long term benefit in improving QoL in adulthood.
SPARCLE1 was funded by the European Union Research Framework 5 Program, the German Ministry of Health, and the German Foundation for the Disabled Child. SPARCLE2 was funded by: Wellcome Trust WT (UK and Ireland); Medical Faculty of the University of Lübeck (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).
In-Depth [longitudinal/cross-sectional study]: This study followed participants from the SPARCLE1 study in which children aged 8-12 years with CP were assessed for QoL in 2004-05. In the second phase of the study, SPARCLE2, 355 participants reported QoL measures in 2009-10 as adolescents aged 13-17 years. The cross-sectional component was comprised of 431 adolescents with CP control-matched from the general population using multivariable regressions. Participants reported QoL across 10 domains using KIDSCREEN, a European questionnaire designed for children and adolescents. Impairment severity and measure of adolescent psychological problems was gauged using the Strengths and Difficulties Questionnaire. Parenting stress was assessed with the Parenting Stress Index Short Form.
Longitudinally, childhood QoL consistently predicted adolescent QoL. Pain in childhood or adolescence was strongly associated with low adolescent QoL in eight domains. Small reductions in adolescent QoL were seen with childhood psychological problems and parenting stress in childhood. Reduced QoL in adolescence was significantly associated (p<0.001) with severity of impairment in autonomy, social support and peers, and moods and emotions. Average differences in QoL between most and least able groups were typically less than 0.5 SD. Only the social support and peers domain showed significantly lower QoL for adolescents with CP than the general population (mean difference -2.7 [0.25 SD], 95% CI -4.3 to -1.40).
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