Presenter(s):
Stefania Ilinca, WHO Regional Office for Europe, Denmark
Abstract
Background:
Quality in long-term care (LTC) is inherently person-centred, emphasizing dignity, autonomy, and well-being. However, many key outcomes—such as satisfaction, social participation, and quality of life—are subjective in nature and difficult to measure externally. To assess the performance of services meaningfully, these outcomes must be directly reported by users themselves. In recognition of this, the WHO Regional Office for Europe has initiated an expert Delphi study to define, validate, and propose a core set of user-reported outcome measures applicable across various care settings.
Methods:
The modified Delphi study, running between May and June 2025, is grounded in a rapid review of academic and grey literature, which identified over 600 potential user-reported outcome. Internal expert analysis eliminated overlaps and synthesized 57 user-reported outcome measures for care users and 22 for informal caregivers. A group of over 60 international experts convened by WHO Europe will evaluate each indicator based on clarity, measurability, relevance, and feasibility. Over 2 rounds of independent ranking and group discussions to address any unclarity and disagreement, the expert group will help refine a core list of user-reported outcome measures.
Results:
The study has not been completed but preliminary results suggest the key categories of user-reported outcome measures relevant to all LTC settings should include at least: quality of life, trust and safety, social connection, user choice and autonomy, satisfaction with care services, adequacy of care services and care workforce and access to information.
In addition, setting-specific categories will need to be considered:
• Residential (facility-based) care: privacy, personalization of living space, activity engagement, nutrition and meals, and experience of transitions into residential care settings.
• Home care: reliability and timing of services, support for independent living and for informal caregivers.
• Community-based care: user satisfaction with activities, coordination, and support for caregivers.
Conclusion:
Embedding user-reported outcome measures into quality management systems is essential for achieving person-centred LTC. These measures offer critical insights into service performance from the perspectives of those who need and use care, and represent the only way to evaluate whether LTC systems deliver on the outcomes that most matter to people.
Note to evaluation panel – at the time of the conference the Delphi study will be completed and the presentation will include the final results.
Bio(s):
Dr. Stefania Ilinca is Technical Officer for long-term care with the WHO Regional Office for Europe, a Senior Atlantic Fellow for Equity in Brain Health and a Salzburg Global Seminar fellow. She has extensive experience working at the interface between policy and research, dividing her time between policy advice, technical support, applied research and advocacy efforts. At WHO Europe, her portfolio covers the transformation of long-term care eco-systems, informed by equity, sustainability and demographic change concerns, with particular attention to strengthening care delivery for people with complex needs, supporting integrated care models, promoting quality in long-term care delivery and leveraging digital and social innovations.
