Self- and Proxy-Completion of Quality of Life Assessment in Dementia Care: A Review of Reviews.

Background and Purpose: Quality of life (QOL) assessment invites the perspectives of people living with dementia to be shared with family caregivers and healthcare providers. A review of reviews was conducted to describe synthesized evidence (i.e., from other reviews) regarding self- and proxy-reports of QOL for this population. Methods: Searches were conducted in four databases. The 25 included articles addressed self- or proxy-rated patient-reported outcome measures, focused on any type of dementia, and were a review or synthesis published in English. Results: Individuals with dementia are largely able to self-report QOL. Proxy-reports are incongruent with self-reports due to various factors, including the proxy-patient relationship and perspective of measurement. Conclusion: When assessing QOL for people with dementia, self-reports are preferred to proxy-reports; however, a combination is recommended.

Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers.

PURPOSE: To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. METHODS: Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. RESULTS: Older adults and family caregivers (N = 12) wanted basic knowledge about what "QOL assessment" meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. CONCLUSION: Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults .