Patient reported outcome measures can help drive global patient centred healthcare reform, but we need a more efficient coordinated approach to assessment if we are to fully realise benefits for patients and society, say Melanie Calvert and colleagues.
Melanie Calvert, professor of outcomes methodology, Derek Kyte, lecturer in health research methods and NIHR fellow, Gary Price, patient partner, member of CPROR executive, Jose M Valderas, professor of health services and policy research, Niels Henrik Hjollund, clinical professor
Key messages
Patient reported outcome data are increasingly being used by a range of stakeholders in healthcare
These data may offer major benefits to patients and society, but current use is fragmented and suboptimal
We propose an integrated evidence based approach to data collection to meet multiple stakeholder needs
Over the past decade we have seen a global rise in the involvement of patients in coproducing research and decisions about their health and care. “Measuring what matters to patients” is recognised as central to improving patient care and service delivery, but patients need to be involved in deciding what to measure and how.
One way to measure what matters is using patient reported outcome measures (PROMs), which are questionnaires completed by patients to assess the effects of disease or treatment (or both) on symptoms, functioning, and health related quality of life from their perspective. PROM data can be used to inform health technology assessment, pharmaceutical labelling claims, health policy and service improvement, and can support communication between patients and healthcare professionals.
Here we discuss the current applications and potential benefits of PROMs in healthcare and challenges that reduce their potential to drive improvements in patient care. We focus on recent developments in the use of PROMs and consider strategies for efficient PROM data collection to maximise benefits for patients and society.
Current use and benefits
PROM assessment in research and routine clinical practice offers a range of potential benefits for individual patient care and for clinicians, regulators, healthcare management teams, commissioners, and policy makers.
The use of PROMs in research, particularly in clinical trials and observational studies, is well established and can provide valuable evidence on the burden of disease and the efficacy, effectiveness, and cost effectiveness of interventions from a patient perspective. PROM data are increasingly being used to provide evidence for drug and device approval. Emphasis is being placed on involving patients throughout the innovation pathway, including the appropriate collection of PROMs informed by FDA and EMA guidance. PROM data have been used in routine practice for several years; for example, in the UK to assess provider performance in the primary care Quality and Outcomes Framework (QOF) and in the NHS PROMs initiative. Three PROMs (the PHQ9, HADS, and Beck Depression Inventory-II) were used as part of QOF to assess the severity of depression, to support clinical decision making, and to assess provider performance. However, the QOF indicator was dropped in 2013 owing to criticism regarding over-diagnosis using the tools and the potential for gaming. PROMs have been used to measure health gain in patients undergoing hip or knee replacement, among other procedures, based on responses to questionnaires before and after surgery. Patients and referrers can use PROM data to help decide where to receive treatment: NHS Choices publishes provider level outlier data for PROM eligible procedures as part of a “score card.” The evidence to support using PROMs in this way is, however, limited, and challenges with paper based “top down” PROM capture include high rates of missing data and lack of accessible feedback for use by clinicians and patients.