An Exploration of Quality-of-Life Surveys and Indicators in Long-Term Care Homes

Abstract

Introduction: Residential long-term care (LTC) homes are tasked with protecting residents’ health and wellbeing as well as their quality of life. However, insufficient focus on action-oriented quality-of-life monitoring may limit the scope of quality assurance activities that LTC homes engage in. With implementation guidance, subjective quality-of-life indicators could be beneficial for benchmarking, quality comparison, and evidence-informed quality improvement in the LTC sector. This dissertation explored the development, feasibility, and implementation of LTC quality-of-life surveys and indicators with a focus on the interRAI Self-Reported Quality of Life Survey for Long-Term Care Facilities (SQOL-LTCF). Methods: Guided by the Medical Research Council (MRC) Framework for implementing complex interventions, this dissertation included a modified Delphi study, feasibility study, and realist synthesis. First, the modified Delphi study aimed to identify important quality of life indicators through LTC resident and family member focus groups, staff and researcher surveys, and analyses of 2023 data from LTC homes in Flanders, Belgium. Second, the feasibility study used North American SQOL-LTCF data to explore possibilities for risk-adjusting selected quality-of-life indicators. We examined data availability, characteristics, and variability between selected candidate indicators and performed multilevel binary logistic regression modelling to determine whether risk-adjustors would influence LTC home rankings. Third, the realist synthesis examined the implementation of quality of life surveys in LTC homes through a systematic search of academic literature and key stakeholder consultation. Results: The modified Delphi study identified 10 candidate quality of life indicators for the SQOL-LTCF using importance data from 151 research participants and 417 LTC residents. Qualitative and quantitative data determined that, across 11 quality of life domains, respect and safety tend to be relatively more important than personal relationships with other residents and staff. In the feasibility study, an analysis of data from 16,141 LTC residents across 236 LTC homes demonstrated the feasibility of between-home quality comparisons using the SQOL-LTCF. The study also suggested that risk-adjustment based on age or self-rated health could support quality-of-life benchmarking between North American LTC homes. Finally, the realist synthesis found that supportive and empowering contexts, trustworthy data sources, and meaningful stakeholder engagement can support the implementation of quality of life surveys for care planning, quality improvement, and information sharing. Conclusion: Quality of life surveys and indicators show promise for promoting quality assurance activities such as quality monitoring, benchmarking, and comparison. However, individual, organizational, and regulatory contexts can serve as barriers or facilitators. Social desirability biases, workforce shortages, instrument development considerations, privacy-related barriers to data collection, and the quality of interorganizational relationships each have important implications for quality of life monitoring. Ethics: This study has received ethics clearance through the University of Waterloo Research Ethics Board (#45825, #45826) and Social and Societal Ethics Committee of KU Leuven (G-2023-6931-R3(MAR)).