Agreement Between Patient and Proxy Assessments of Health-Related Quality of Life After Stroke Using the EQ-5D and Health Utilities Index

Abstract

Background and Purpose-Proxy informants can provide information on patients who are limited in ability to self-assess health-related quality of life (HRQL) after stroke. One alternative is to exclude assessments of such patients and attenuate generalizability. The purpose of this study was to examine patient-proxy agreement on the domains and summary scores of the EQ-5D and Health Utilities Index Mark 3 (HUI3) after stroke. Methods-An observational longitudinal cohort of 124 patients hospitalized after ischemic stroke and their family caregivers completed the HRQL measures at baseline and were followed up for 6 months. Patient and proxy agreement was assessed by use of weighted or the intraclass correlation coefficient (ICC). Results-At baseline, the more observable domains of HRQL demonstrated greater agreement than the more subjective components. Cross-sectional point estimates of agreement were generally acceptable (ICC Ͼ0.70) for the EQ-5D Index and HUI3 summary scores when assessed Ն1 month after baseline. Agreement between change scores was generally poor to fair (ICC Ͻ0.60), but systematic bias was not observed for the indirect preference-based summary scores between baseline and 6 months. Conclusions-Results suggest that proxy assessments obtained 6 months after stroke are more reliable than those obtained within 2 to 3 weeks after stroke. Although proxy-assessed change scores for indirect preference-based summary scores of the EQ-5D and HUI3 provided suboptimal agreement with patient assessment, limited systematic bias may support their consideration as alternatives to missing data or statistical imputation. Further research into the validity and reliability of proxy assessments is suggested.

How Well Do Standard Stroke Outcome Measures Reflect Quality of Life?

“…27 In the case of the EQ-5D, previous investigations have found moderate agreement between responses from patients and their proxies, 28 with maximum agreement occurring when assessments were conducted at 6 months after stroke. 29 As our study assessed outcomes at 3 months, the degree of agreement between patient and proxy ratings in our study may have been poorer than in previous studies. Despite the potential bias introduced by proxy rating of QoL, the inclusion of proxy responses are preferable to the alternative in those patients who are unable to report their own QoL.…”

Quality-Adjusted Life Expectancy (QALE) and Loss of QALE for Patients With Ischemic Stroke and Intracerebral Hemorrhage

“…First, the mean utility value reported by our sample (0.8) appeared to be higher than those in other studies. 24 -26 Overall, our sampled patients tended to report fewer problems in dimensions of mobility, self-care, and usual activities than those surveyed 6 months after stroke by Pickard et al, 26 whereas the dimensions of pain/discomfort and anxiety/depression were similar. Such a difference might be attributed to the fact that we were unable to invite patients with cognitive impairments to fill in the EQ-5D questionnaire.…”

Is Health-Related Quality of Life Improving After Stroke?

“…34 In a clinical study of patients with severe stroke, mean self-reported HUI3 scores were lowest for the domains of ambulation and dexterity at both baseline and 6-month follow-up. 35 Further, ample data show the importance of cognition for recovery of function after stroke. Losses in cognitive function relate to falls incidence, 36 the ability to learn new motor skills, 37,38 and recovery of language skills in people with aphasia.…”