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. 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. 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. 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.

中文翻译：

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脑瘫青少年生活质量调查问卷：孟加拉 CPQoL 青少年的心理测量特性

低收入和中等收入国家脑瘫（CP）患者的生活质量（QoL）和健康相关生活质量（HRQoL）测量对于评估干预措施和治疗的影响至关重要，脑瘫是儿童身体残疾的主要原因。为最能改善人们生活的政策提供信息。本研究的目的是对脑瘫青少年生活质量 (CPQoL-Teens) 自我报告和代理报告问卷进行跨文化翻译和心理测量验证，以应用于孟加拉国脑瘫青少年。使用向前和向后跨文化翻译协议将 CPQoL-Teens 调查问卷翻译成孟加拉语。调查问卷由采访者向通过孟加拉国脑瘫登记册确定的青少年及其主要照顾者进行。评估了可行性、敏感性、内部一致性、内容、并发和结构效度。154 名 CP 青少年（10 至 18 岁；平均 15 岁 1 个月 SD 1 岁 8 个月；31.2% 为女性）参与了研究。自我报告问卷和代理报告问卷的可行性、敏感性和内部一致性都非常好；除了与非上学出勤相关的“学校幸福感”之外，没有任何缺失分数（48.4％至74.7％）；地板、吊顶效应≤13.6%；克朗巴赫 α 值 0.77 至 0.94。仪器效度良好；验证性因素分析反映了七个原始工具维度中的五个。CPQoL-Teens 在大多数维度上与 Kidscreen-27 相关（r = 0.176 至 0.693，p < 0.05）；尽管可以通过样本中心理健康问题的同质性来解释，但在已知群体中观察到的心理健康状况差异很小（p < 0.05）。CPQoL-青少年自我报告和代理报告问卷成功翻译成孟加拉语，并显示出良好的可行性和强大的心理测量特性，证实了评估孟加拉国 CP 青少年 HRQoL 指标的适合性。