Aubeeluck A, Buchanan H
School of Nursing, University of Nottingham, Nottingham, UK.
Clin Genet. 2007 May;71(5):434-45. doi: 10.1111/j.1399-0004.2007.00784.x.
Research into the experience of the Huntington Disease (HD) spousal carer has established that carers experience several unique obstacles within their care-giving role. However, there is still a need to establish methodically the factors that impact on the HD spousal carers' situation and ultimately their quality of life. The aim of this pilot study, which was a result of three previous exploratory studies, was to validate a HD-specific quality-of-life (QoL) measure, the Huntington disease quality-of-life battery for carers (HDQoL-C) for use (initially) with spousal carers of HD patients. Eighty-seven HD spousal carers took part in the piloting of the HDQoL-C to assess its reliability and validity as a tool for use within QoL research. Results established the HDQoL-C as a multidimensional and psychometrically sound disease-specific and subjective QoL assessment tool that incorporates the individual's physical health, psychological state, level of independence, social relationships and personal beliefs. The HDQoL-C demonstrates good internal consistency, test-re-test reliability and congruent validity.
对亨廷顿舞蹈症（HD）患者配偶护理者经历的研究表明，护理者在其护理角色中面临一些独特的障碍。然而，仍有必要系统地确定影响HD患者配偶护理者状况及最终生活质量的因素。这项先导研究是基于之前三项探索性研究开展的，其目的是验证一种针对HD的生活质量（QoL）测量方法，即护理者用亨廷顿舞蹈症生活质量量表（HDQoL-C）（最初）用于HD患者的配偶护理者。87名HD患者的配偶护理者参与了HDQoL-C的试用，以评估其作为QoL研究工具的可靠性和有效性。结果表明，HDQoL-C是一种多维且心理测量学上合理的疾病特异性主观QoL评估工具，它纳入了个体的身体健康、心理状态、独立程度、社会关系和个人信念。HDQoL-C具有良好的内部一致性、重测信度和同质性效度。
