In a recent study, researchers explored the differences in health-related quality of life (HRQoL) assessments between individuals living with dementia (PlwD) and their caregivers. Using the EuroQol 5 Dimension 5 Level survey (EQ-5D-5L), the study aimed to evaluate how self-rated and proxy-rated health profiles compare. The findings revealed significant discrepancies, highlighting the need for better understanding and methodologies in this area.
Study Methods and Participant Demographics
The study gathered EQ-5D-5L data, along with sociodemographic and clinical information, from 174 dyads participating in a cluster-randomized, controlled intervention trial. Researchers assessed the response distribution and agreement of self- and proxy-rated EQ-5D-5L health profiles. Inconsistencies between ratings at the individual dimension level were analyzed using the Paretian Classification of Health Change (PCHC).
Participants included people living with dementia, with an average age of 80.1 years, nearly half of whom were female, and a majority being mildly to moderately cognitively impaired. The study found that PlwD generally rated their health higher than caregivers did, with mean utility index scores of 0.75 and 0.68, respectively. Notably, 83% of PlwD had a utility index score above 0.5.
Discrepancy Findings
A striking 95% of PlwD rated their health differently compared to their caregivers, with 66% showing divergent responses in at least three EQ-5D-5L dimensions. Only 5% of dyads had identical ratings. The most common discrepancy involved one higher or lower EQ-5D-5L response, occurring in 35.4% of cases. Caregivers were twice as likely to report “moderate problems” across the five-point Likert scale.
The “usual activities” dimension had the lowest agreement between PlwD and caregiver ratings, with a weighted kappa of 0.23. Proxies tended to report more problems in observable dimensions like “usual activities” and fewer discrepancies in less observable domains such as “pain/discomfort” and “anxiety/depression.”
Concrete Inferences for Caregivers and Researchers
– PlwD often perceive their health better than caregivers report, indicating a potential disparity in understanding or assessment.
– Caregivers exhibit a central tendency bias, often rating health in the middle range, regardless of actual health status.
– The “usual activities” dimension shows the highest discrepancy, suggesting a need for more precise assessment tools in this area.
– Proxies are more likely to identify issues in physical, observable activities than in emotional or less tangible aspects.
These findings suggest a need for improved assessment methodologies to bridge the gap between self- and proxy-rated health evaluations, ensuring better care and support for people living with dementia.
Original Article: Alzheimers Dement (N Y). 2024 Jun 19;10(2):e12486. doi: 10.1002/trc2.12486. eCollection 2024 Apr-Jun.
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