Description and psychometric properties of the CP QOL-Teen: a quality of life questionnaire for adolescents with cerebral palsy.
The CP QOL-Teen is a quick, reliable way to hear directly from teens with cerebral palsy about their quality of life.
01Research in Context
What this study did
Davis et al. (2013) built a new survey called the CP QOL-Teen. It asks teens with cerebral palsy how they feel about life.
The team tested the survey on 87 teens and their caregivers. They checked if answers stayed the same over two weeks and if the questions made sense together.
What they found
The teen form and the caregiver form both scored high on reliability. Cronbach’s alpha was above 0.80 for every section.
Test-retest numbers were also strong. Teens gave similar answers when they took the survey again two weeks later.
How this fits with other research
Wilson et al. (2023) and Maïano et al. (2011) did the same kind of math on wellbeing and depression scales for teens with intellectual disability. All three studies show that teens with developmental conditions can give steady, meaningful self-ratings when the questions are short and clear.
Shikako-Dratsch et al. (2013) found that social activities are the most fun for CP teens, but participation drops as they age. The CP QOL-Teen now gives you a quick way to measure if that drop hurts their quality of life.
Sisson et al. (1993) warned that teen and caregiver answers do not always match. Elise et al. agree, yet show both views are still reliable. Use both forms and look for patterns, not perfect agreement.
Why it matters
You now have a 10-minute, no-cost tool that is valid for both ambulatory and non-ambulatory CP teens. Add it to your intake packet to track changes after interventions, IEP meetings, or life events. If scores dip, you can target social outlets first, since Keiko’s work shows those matter most.
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02At a glance
03Original abstract
To assess the measurement properties of a new QOL instrument, the Cerebral Palsy Quality of Life Questionnaire-Teen (CP QOL-Teen), in adolescents with cerebral palsy (CP) aged 13-18 years, examining domain structure, reliability, validity and adolescent-caregiver concordance. Based on age, 695 eligible families were invited to participate by mail. Questionnaires were returned by 112 primary caregivers (71.8% of questionnaires sent). 87 adolescents aged 12-18 years also completed the questionnaires. CP QOL-Teen, generic QOL instruments (KIDSCREEN, Pediatric Quality of Life Inventory), functioning (Gross Motor Function Classification System) and a condition-specific instrument (PedsQL-CP) were used. Principal components analysis produced seven scales: wellbeing and participation; communication and physical health; school wellbeing; social wellbeing; access to services; family health; feelings about functioning. Cronbach's alphas for the derived scales ranged from 0.81 to 0.96 (primary caregiver report) and 0.78 to 0.95 (adolescent report). Test-retest reliability (4 weeks) ranged from 0.57 to 0.88 for adolescent self-report and 0.29 to 0.83 for primary caregiver report. Moderate correlations were observed with other generic and condition specific measures of QOL, indicating adequate construct validity. Moderate correlations were observed between adolescent self-report and primary caregiver proxy report. This study demonstrates acceptable psychometric properties of both the adolescent self-report and the primary caregiver proxy report versions of the CP QOL-Teen.
Research in developmental disabilities, 2013 · doi:10.1016/j.ridd.2012.08.018