Division of Nursing, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Royal Derby Hospital, Uttoxeter Road , Derby, DE22 3DT, UK.
Qual Life Res. 2013 Jun;22(5):1093-8. doi: 10.1007/s11136-012-0227-2. Epub 2012 Jul 21.
Existing research suggests that family caregivers of persons with Huntington's disease (HD) face a distinct series of problems, linked to the complex nature of the disease. Aubeeluck and Buchanan (Clin Genet, 71(5):434-445, 2007) developed and validated a disease-specific measure used to explore caregivers quality of life and assess the efficacy of therapeutic interventions. This current study builds on this research through the validation of French and Italian translations of the Huntington's disease quality of life battery for carers (HDQoL-C).
A total of 301 family carers completed the HDQoL-C. Participants were recruited through the "Euro-HDB" study which is measuring the burden in HD across Europe and the USA.
Factor analysis demonstrated good internal consistency, reliability and congruent validity. Carers who cared for patients with less clinically severe symptoms reported significantly better QoL than carers of patients with more clinically severe symptoms.
Findings indicate the HDQoL-C is multi-lingual, multi-cultural and easily applicable in other languages.
现有研究表明，亨廷顿病（HD）患者的家庭照顾者面临一系列独特的问题，这些问题与疾病的复杂性质有关。Aubeeluck 和 Buchanan（Clin Genet，71（5）：434-445，2007）开发并验证了一种专门用于探索照顾者生活质量并评估治疗干预效果的疾病特异性衡量标准。本研究通过验证针对照顾者的亨廷顿病生活质量量表（HDQoL-C）的法译版和意译版，进一步推进了这一研究。
共有 301 名家庭照顾者完成了 HDQoL-C 的测试。参与者是通过“Euro-HDB”研究招募的，该研究正在欧洲和美国测量 HD 的负担。
因子分析显示了良好的内部一致性、可靠性和一致性有效性。与照顾临床症状更严重的患者的照顾者相比，照顾临床症状较轻的患者的照顾者报告的生活质量显著更好。
研究结果表明，HDQoL-C 是多语言、多文化的，并且易于在其他语言中应用。
