Health-related quality of life in Huntington’s Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington’s Disease health-related quality of life questionnaire (HDQoL)

Huntington’s 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 patient–proxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings. A total of 105 patient–proxy pairs completed the Huntington’s disease health-related quality of life questionnaire (HDQoL) and other established HrQoL measures (EQ-5D and SF-12v2). Proxy–patient agreement was assessed in terms of absolute level (mean ratings) and intraclass correlation. Proxies’ ratings were at a similar level to patients’ 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 patients’ 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 patient’s 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 patients’ self-ratings of HrQoL, on the Summary Scale and all Specific Scales. The patient–proxy 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

Quality of life in dementia:a study on proxy bias

<p>Background: Measurement of health-related quality of life (HRQoL) in dementia is difficult. At some point people with dementia become unable to meaningfully assess their own HRQoL. At such a point in time researchers need to rely on other types of information such as observation or assessments from informal caregivers (proxies). However, caregiver assessments may be biased by several mechanisms. The current study explores whether caregivers project part of their own HRQoL in their assessments of patient HRQoL.</p><p>Methods: The participants in the current study were 175 pairs, consisting of community-dwelling persons with dementia and their caregivers. The EQ-5D, the EQ-VAS and the QoL-AD were administered to collect HRQoL measurements from patients and caregivers at baseline, 6 months and 12 months. Two linear mixed models were used to investigate factors that bias proxy ratings, one with the EQ-VAS as dependent variable, and one with the EQ-5D utility as dependent variable. The independent variables were caregiver age, caregiver sex and caregiver QoL-AD items.</p><p>Results: The linear mixed model with EQ-VAS as dependent variable indicated that 3 caregiver characteristics, namely caregiver age, money (caregiver's financial situation) and valuation of life as a whole were significant predictors of the patient-by-proxy VAS scores. The linear mixed model with utility value as the dependent variable showed that caregiver age and valuation of the ability to do things for fun were significant predictors of the patient-by-proxy EQ-5D utility values.</p><p>Conclusions: The current study was a first step in identifying factors that bias patient-by-proxy HRQoL assessments. It was discovered that caregivers project part of their own HRQoL onto patients when assessing patient HRQoL. This implies that patient-by-proxy HRQoL values should be interpreted with caution and not be used as a direct substitute for patient self-assessment, even when patients are no longer able meaningfully assess themselves.</p>

Assessing parent-child agreement in health-related quality of life among three health status groups

PURPOSE: To examine parent-child agreement regarding a child's health-related quality of life (HRQOL) among three health status groups. METHODS: Parent-child agreement was evaluated for three health status groups of a population-based sample: (1) children with mental health problems (N = 461), (2) children with physical health problems (N = 281), and (3) healthy controls (N = 699). The KIDSCREEN-27 was used to assess HRQOL. The children were 9-14 years of age. RESULTS: Intraclass correlation coefficients were mostly good across all HRQOL scores and health status groups. This relatively high level of agreement was also reflected by the following findings: first, the AGREE group was the largest in three out of five HRQOL subscales in all health status groups; second, when disagreement occurred, it was often minor in magnitude. Despite this relatively high level of agreement, the means of self-ratings were significantly higher for all HRQOL scores and health status groups than the means of proxy ratings. These higher self-ratings were especially pronounced among children with mental health problems in certain HRQOL domains. CONCLUSIONS: Even though the level of parent-child agreement regarding a child's HRQOL is relatively high, it should be considered that children (especially those with mental health problems) often report better HRQOL than their parents. It is, therefore, highly recommended that both proxy- and self-ratings are used to evaluate a child's HRQOL comprehensively