Patient- and Proxy-Reported Utility in Alzheimer Disease Using the EuroQoL

Abstract

This study aims to compare patient- and proxy-rated utilities and health-related quality of life from individuals in different stages of Alzheimer disease (AD). Two hundred seventy-two patients and their primary caregivers were enrolled in a prospective observational study and underwent three consecutive interviews, 6 months apart. Average Mini-Mental State Examination (MMSE) scores were 19.3, 18.0, and 16.4 at the three interviews; scores ranged from 0 to 30. Using the EuroQoL EQ-5D instrument, patient-rated health utilities were on average 0.833 with little variation across MMSE-based severity levels. Proxy-rated health utilities were 0.69 (MMSE >25), 0.64 (MMSE 21-25), 0.50 (MMSE 15-20), 0.49 (MMSE 10-14), and 0.33 (MMSE <10). Proxy-rated utilities, as well as changes in utilities over time, were significantly related to MMSE scores and inversely related to scores on a brief version of the neuropsychiatric inventory (NPI) and institutionalization. Utilities were highly correlated with the disease-specific quality of life instrument QoL-AD. The study shows that the EuroQoL can be used to rate utilities in Alzheimer disease, but there are important differences between patient- and proxy-ratings.

Health State Valuation in Mild to Moderate Cognitive Impairment: Feasibility of Computer-Based, Direct Patient Utility Assessment

“…Consistent with findings by Jonsson and colleagues [11] also using the EQ 5D, self ratings of current health by patients with mild cognitive impairment in the current study tended to be higher than paired caregiver ratings when the time trade-off or rating scale assessment methods were used.…”

“…They also found that the EQ 5D scores did not systematically vary with their dementia severity measure among the 137 patients studied. A larger study by Jonsson and colleagues [11] (n = 208) reports that the agreement between patients' and caregivers' scores was not lower among the more severely affected cases and that patients tended to rate their health state as being better than the (proxy) ratings given by their caregivers. This was true even among those with mild dementia.…”

“…In this cross-sectional study, utility-related data were collected on 679 patient-caregiver pairs using the Health Utilities Index Mark II, a generic multiattribute, preference based system. Three recent studies used the EuroQol 5D (EQ 5D), a generic health-related quality of life instrument, to obtain health state ratings from both patients with dementia and their caregivers [9][10][11]. Coucill et al studied 64 patients with questionable to moderate dementia and found that responses across raters were "highly variable" [9].…”

Clinical effectiveness and cost-effectiveness of depth of anaesthesia monitoring (E-Entropy, Bispectral Index and Narcotrend): a systematic review and economic evaluation

“…The QoL impact of POCD was based on the utility decrement reported by Jonsson and colleagues 110 for the difference between a MMSE evaluation score of > (no dysfunction), which had a utility of 0.69, and a MMSE evaluation score of between 21 and 25 (indicating mild cognitive impairment), which had a utility of 0.64.…”

A controlled clinical trial on the effects of exercise on neuropsychiatric disorders and instrumental activities in women with Alzheimer's disease

“…Dementia patients with severe impairment and requiring more assistance during the execution of activities of daily living have a risk of death three times higher than that of older adults who perform their activities normally 50 . According to these data, patients who postpone the onset of functional impairment and mitigate neuropsychiatric disorders tend to have a lower degree of suffering due to dementia, put less strain on caregivers, and decrease their risk of mortality 51 . It is worth mentioning some methodological limitations to our study that may have weakened the findings.…”