Predictors of parent-reported quality of life of adolescents with cerebral palsy: A longitudinal study. (March 2017)

• Record Type: Journal Article
• Authors: Rapp, Marion; Eisemann, Nora; Arnaud, Catherine; Ehlinger, Virginie; Fauconnier, Jérôme; Marcelli, Marco; Michelsen, Susan I.; Nystrand, Malin; Colver, Allan; Thyen, Ute
• Is Part Of: Research in developmental disabilities. Volume 62(2017:Mar.)
• Page Start: 259
• Page End: 270
• Publication Date: 2017-03
• Subjects: CP Cerebral Palsy -- GMFCS Gross Motor Function Classification System -- PSI Parenting Stress Index Short Form -- QoL Quality of Life -- SDQ Strength and Difficulties Questionnaire -- SPARCLE Study of PARticipation of Children with cerebral palsy Living in Europe; Cerebral palsy -- Quality of life -- Adolescent -- Parent-reported -- Predictors; Developmental disabilities -- Periodicals; Developmentally disabled -- Research -- United States -- Periodicals; Developmentally disabled children -- Education -- Research -- United States -- Periodicals; Developmental Disabilities -- Periodicals; Disabled -- Periodicals; Mental Retardation -- rehabilitation -- Periodicals; Personnes atteintes de troubles du développement -- Recherche -- États-Unis -- Périodiques; Enfants atteints de troubles du développement -- Éducation -- Recherche -- États-Unis -- Périodiques; Développement, Troubles du -- Recherche -- États-Unis -- Périodiques; 616.858800
• DOI: 10.1016/j.ridd.2016.12.005
• Languages: English
• ISSNs: 0891-4222

Abstract

Abstract: Aim: Parent-reporting is needed to examine Quality of Life (QoL) of children with cerebral palsy (CP) across all severities. This study examines whether QoL changes between childhood and adolescence, and what predicts adolescent QoL. Method: SPARCLE is a European cohort study of children with CP, randomly sampled from population databases. Of 818 8–12-year-olds joining the study, 594 (73%) were revisited as 13–17-year-olds. The subject of this report is the 551 (316 boys, 235 girls) where the same parent reported QoL on both occasions using KIDSCREEN-52 (transformed Rasch scale, mean 50, SD 10 per domain). Associations were assessed using linear regression. Results: Between childhood and adolescence, average QoL reduced in six domains (1.3-3.8 points, p < 0.01) and was stable in three ( Physical wellbeing, Autonomy, Social acceptance ). Socio-demographic factors had little predictive value. Childhood QoL was a strong predictor of all domains of adolescent QoL. Severe impairments of motor function, IQ or communication predicted higher adolescent QoL on some domains; except that severe motor impairment predicted lower adolescent QoL on the Autonomy domain. More psychological problems and higher parenting stress in childhood and their worsening by adolescence predicted lower QoL in five and eight domains respectively; contemporaneous pain in seven domains. The final model explained 30%–40% of variance in QoL, depending on domain. Interpretation: In general, impairment severity and socio-demographic factors were not predictors of lower adolescent QoL. However, pain, psychological problems and parenting stress were predictors of lower adolescent QoL in most domains. These are modifiable factors and addressing them may improve adolescent QoL.