Abstract

Abstract Objectives Health systems across the Organization for Economic Cooperation and Development (OECD) spend around 9% of their GDP on health, but we know surprisingly little about whether health systems are truly delivering the care people need. One solution is the routine collection of patient reported outcome measures (PROMs) and patient reported experience measures (PREMs), i.e. patients’ subjective health status and experiences of care. The aim of this study is to evaluate whether validated generic PROMs and PREMs measure criteria relevant to routine performance assessment of and monitoring in primary care. Methods This is a multimethod study. First, we collected qualitative data using the nominal group technique to identify the roles and tasks of primary care from the perspective of patients, providers, and decision-makers in healthcare. Second, we conducted a systematic literature search in EMBASE supplemented by a grey literature search to identify self-administered, validated, and generic PREMs and PROMs for adults used in primary care. Results The role of primary care is not limited to improving health, but also includes, for example, patient empowerment and support in navigating the healthcare system. Experiences of care and the supportive structure of primary care were rated as more important than health outcomes. Six of 14 questionnaires identified in the literature review address both PREMs and PROMs. PREMs largely focused on experiences with healthcare providers. Comparison of both data sources revealed a lack of PREMs addressing experiences with care structures. Conclusions The results suggest that care experiences are an outcome in their own right in primary care and should thus be considered in routine evaluation of primary healthcare services, which additionally allows pointing to quality improvements. Future questionnaires should address experiences with care structures and the relationship between care experience and health outcomes. Key messages • Alongside health outcomes, care experiences are a primary care outcome in their own right and should thus be considered in routine assessment. • Future routine assessment tools should address experiences with care structures and the relationship between care experiences and health outcomes.

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