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Health-related quality of life in Huntingtonâs Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntingtonâs Disease health-related quality of life questionnaire (HDQoL)
Huntingtonâs disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. Proxy evaluation is relevant for HD as its manifestation might limit the ability of persons to report their health-related quality of life (HrQoL). This study explored patientâproxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings. A total of 105 patientâproxy pairs completed the Huntingtonâs disease health-related quality of life questionnaire (HDQoL) and other established HrQoL measures (EQ-5D and SF-12v2). Proxyâpatient agreement was assessed in terms of absolute level (mean ratings) and intraclass correlation. Proxiesâ ratings were at a similar level to patientsâ self-ratings on an overall Summary Score and on most of the six Specific Scales of the HDQoL. On the Specific Hopes and Worries Scale, proxies on average rated HrQoL as better than patientsâ self-ratings, while on both the Specific Cognitive Scale and Specific Physical and Functional Scale proxies tended to rate HrQoL more poorly than patients themselves. The patientâs disease stage and mental wellbeing (SF-12 Mental Component scale) were the two factors that primarily affected proxy assessment. Proxy scores were strongly correlated with patientsâ self-ratings of HrQoL, on the Summary Scale and all Specific Scales. The patientâproxy correlation was lower for patients at moderate stages of HD compared to patients at early and advanced stages. The proxy report version of the HDQoL is a useful complementary tool to self-assessment, and a promising alternative when individual patients with advanced HD are unable to self-report