Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis

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 WT 086315 A1A (UK and Ireland); Medical Faculty of the University of Lübeck ...

Professionals’ Perceptions about the Need for Pain Management Interventions for Children with Cerebral Palsy in South African School Settings

“…The implementation of a standardized program requires professional teamwork to guarantee that children with CP receive the best medical treatment available. The participants in this study seemed aware of the advantage of teamwork, and, if effectively implemented, their work could greatly improve the children's participation and quality of life in later years (Colver et al, 2015;Damiano, 2007). An implementation of systematic follow-up programs would also highlight the importance of resources in and outside the school settings and maybe also result in more equal access to medication and other treatment.…”

“…As participation in everyday activities helps children to develop and become independent members of a society, it is important to pay special attention to this group of children. If pain in early ages becomes an obstacle, it may influence the children's ability to participate in social activities during adolescence and, subsequently, their perception of quality of life (Colver et al, 2015;Dang et al, 2014). Children's participation in everyday activities is also influenced by environmental factors, such as access to public and health services due to availability in general or in the local area where they live.…”

“…A situation demanding tough prioritizations was most obvious in the school with the highest proportion of children with CP and the lowest number of therapists (see Table 1). As it has been established that adolescents with CP who are in pain rate their quality of life lower than their peers without pain (Colver et al, 2015), a failure in pain management might risk their quality of life and these children's opportunities to acquire knowledge by participating in school activities.…”

We have to talk about health-related quality of life

“…A few years ago, the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE) researchers published a seminal paper1 on the ‘quality of life’ of young people with cerebral palsy (the reason for the quotation marks will become clear). The unarguable message of this work was that—so long as they were free from pain—these young peoples’ self-assessments of their emotional well-being matched those of the general population, despite sometimes very severe objective impairments.…”

Relationship between habitual physical activity, gross motor function, community mobility and quality of life in 4-5 year old children with cerebral palsy

“…82 In addition, QOL between children with and without CP reported no significant differences. [83][84][85] CP QOL domains such as feelings about function, and participation and physical health had a lower score in children with CP compared to children with typical development. 83 Hypothesis 5b: Habitual physical activity will be postitively associated with broad domains of parent-reported QOL in children with CP aged 5 years.…”