A quality of life questionnaire for adolescents with cerebral palsy: psychometric properties of the Bengali CPQoL-teens

BACKGROUND: Quality of life (QoL) and health-related quality of life (HRQoL) measurement in low and middle-income countries of people with cerebral palsy (CP), the major cause of childhood physical disability, is essential to assess the impact of interventions and inform policies that best improve people’s lives. The purpose of this study was to cross-culturally translate and psychometrically validate the Cerebral Palsy Quality of Life-Teens (CPQoL-Teens) self- and proxy-report questionnaires for application with adolescents with CP in Bangladesh. METHOD: The CPQoL-Teens questionnaires were translated to Bengali using forward and backwards cross-cultural translation protocols. The questionnaires were interviewer administered to adolescents and their primary caregivers, identified through the Bangladesh Cerebral Palsy Register. Feasibility, sensitivity, internal consistency, content, concurrent and construct validity were assessed. RESULTS: One hundred fifty four adolescents with CP (10 to 18y; mean 15y 1mo SD 1y 8mo; 31.2% female) participated. Feasibility, sensitivity and internal consistency of both self- and proxy-report questionnaires was excellent; nil missing scores except ‘school wellbeing’ which was associated with non-school attendance (48.4 to 74.7%); floor and ceiling effect ≤13.6%; Cronbach’s alpha 0.77 to 0.94. Instrument validity was good; confirmatory factor analysis reflected five of the seven original instrument dimensions. CPQoL-Teens correlated to Kidscreen-27 on most dimensions (r = 0.176 to 0.693, p < 0.05); minimal difference in known groups was observed by mental health status (p < 0.05) although could be accounted for by homogeneity of mental health problems in the sample. CONCLUSION: The CPQoL-Teens self- and proxy report questionnaires successfully translated to Bengali and showed excellent feasibility and strong psychometric properties confirming suitability to assess indicators of HRQoL among adolescents with CP in Bangladesh.