Predictors of parent-reported quality of life of adolescents with cerebral palsy: A longitudinal study.
Pain, mental-health red flags, and caregiver stress—not limb power—drive how adolescents with CP feel about life.
01Research in Context
What this study did
Rapp et al. (2017) tracked the same kids with cerebral palsy from age 9 to age 15. They asked parents to rate the teen's quality of life each year.
The team also measured pain, behavior problems, parenting stress, and physical ability. They wanted to see which factors best predict how good life feels in adolescence.
What they found
Quality of life dipped slightly as kids entered their teens. Pain, mental-health issues, and high parenting stress were the biggest levers you can change.
Surprisingly, how well the teen could walk or use their hands did not predict life satisfaction once pain and stress were counted.
How this fits with other research
Di Lieto et al. (2025) looked at younger children with CP and found verbal IQ and a helpful social scene lifted quality of life more than motor skills. Together the two studies show: think beyond walking scores at every age.
Marchal et al. (2013) studied parents of kids with Down syndrome and likewise found parent supports—like partner closeness and personal time—drove parent well-being more than child skills. The pattern repeats: family context beats raw impairment.
Adams et al. (2025) surveyed autism parents and saw the same trio: child behavior stress, parent coping skills, and money worries shaped parent quality of life. Marion flips the lens to the teen's own life, but the actionable variables stay the same.
Why it matters
For BCBAs writing plans, this means add pain screens and caregiver stress checks next to gait goals. A teen who hurts or a parent at the edge will not fully use your mobility program. Build in coping skills, respite referrals, or simple pain logs. Small fixes there can lift quality of life more than another hour of gait training.
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02At a glance
03Original 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.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2016.12.005