Person-reported outcomes in diabetes care: What are they and why are they so important?

ABSTRACT

In this review, we aim to show how person-reported outcomes (PROs) and person-reported experiences (PREs) can significantly contribute to the way diabetes care is delivered, the involvement of people with diabetes in diabetes care, and the collaboration between health care professionals and people with diabetes. This review focuses on the definition and measurement of PROs and PREs, the importance of PROs and PREs for person-centred diabetes care, and integrating the perspectives of people with diabetes in the evaluation of medical, psychological and technological interventions. PROs have been increasingly accepted by Health Technology Assessment bodies and are therefore valued in the context of reimbursement decisions and consequently by regulators and other health care stakeholders for the allocation of health care resources. Furthermore, the review identified current challenges to the assessment and use of PROs and PREs in clinical care and research. These challenges relate to the combination of questionnaires and ecological momentary assessment for measuring PROs and PREs, lack of consensus on a core outcome set, limited sensitivity to change within many measures and insufficient standardization of what can be considered a minimal clinically important difference. Another issue that has not been sufficiently addressed is the involvement of people with diabetes in the design and development of measures to assess PROs and PREs.