Patient related outcome measures (PROMs) in long term conditions—is it time to bring them into routine clinical practice?
BMJ 2024; 386 doi: https://doi.org/10.1136/bmj.q1921 (Published 06 September 2024) Cite this as: BMJ 2024;386:q1921
- Ramzi A Ajjan, professor of metabolic medicine12,
- Emma Doble, patient and public strategy editor34,
- Richard I G Holt, professor in diabetes and endocrinology56,
- David Marrero, J O Ritchey professor emeritus of medicine7
- 1Clinical Population and Sciences Department, Leeds Institute of Cardiovascular and Metabolic Medicine, University of Leeds, UK
- 2Diabetes Centre, St James’s University Hospital, Leeds Teaching Hospitals Trust, Leeds, UK
- 3Patient author, UK
- 4The BMJ, UK
- 5Human Development and Health, Faculty of Medicine, University of Southampton, UK
- 6Southampton National Institute for Health Research Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
- 7Indiana University School of Public Health, Bloomington, Indiana, USA
In most consultations about long term conditions, healthcare professionals tend to focus on patients’ clinical outcomes or targets. Frequently missing from these discussions is how psychologically and physically challenging the day-to-day management of these conditions can be, as patients work to alleviate symptoms and reduce the risk of long term complications.1 In an era where patient management is focused on following guidelines and attaining treatment targets, the lived experience of the individual person can be forgotten. Patient related outcomes (PROs) could be a useful way to re-centre the individual and improve personalised care.
PROs, with their specific focus on a person’s lived experience, are increasingly receiving attention in healthcare settings.2 They capture patients’ responses to the demands of self-management and its effects on other areas of their life—factors that can have considerable influence on a person adhering to treatment and achieving clinical targets. PROs are measured using specific, validated questionnaires, known as patient related outcome measures (PROMs). Unlike biometric data, a key advantage of PROMs is that information on patients’ physical and mental health status can be collected independently of healthcare professionals.
The use of PROMs in clinical settings has clear benefits, including more individualised patient care and enhanced patient engagement.345 Indeed, a growing body of evidence indicates that assessing PROs considerably improves patient outcomes and quality of life, particularly in long term conditions such as diabetes.678 Moreover, by discussing what matters most to patients, PROs can make consultations more meaningful for both patient and provider, without necessarily increasing the duration of appointments.
Identifying the correct PROMs to use, however, isn’t an easy task and depends on the type and stage of a patient’s condition, as well as the therapeutic modalities used.7 In diabetes, for example, the appropriate PROMs to apply will depend on the type of diabetes, a patient’s age, the use of treatments (varying in complexity), the use of technology (such as continuous glucose monitoring and/or an insulin pump), and whether a patient has experienced treatment induced hypoglycaemia or other diabetes related complications that can affect quality of life.89101112
To add to this complexity there are generic PROMs that assess a person’s general wellbeing, such as the Euro Quality of Life-5 Dimensions, as well as condition specific PROMs, such as the Diabetes Distress Scale, that assess the distinct ways that someone could be affected by the disease process and clinical interventions.7
How should this work in clinical practice?
Before PROMs form part of routine care we should consider three practical obstacles. Firstly, we need to identify the right set of PROMs for each patient. Different clinical treatments and management pathways can have a wide range of effects on patients, and different PROMs are needed in different populations to accurately capture the treatment burden.
Patients with a higher risk of poor mental health outcomes because of their condition should be prioritised when healthcare systems start to incorporate PROMs into routine practice. We know, for example, that people with type 1 diabetes have an increased risk of a range of mental health disorders,13 but these aren’t routinely discussed with healthcare providers, as the focus in clinical consultations is mainly on glucose levels. Targeting these patients with appropriate PROMs could detect mental health problems early, facilitating patients’ access to timely interventions while also increasing their engagement in managing their condition. In this case the benefits of PROMs could be twofold: lowering a patient’s future risk of diabetes complications and improving their short and long term quality of life.
Secondly, we should be realistic about the feasibility of the PROMs we use and should ensure that they fit into existing clinical pathways. It’s important for PROMs to strike a balance between being comprehensive and yet manageable in busy clinical practices. Further careful analysis of available PROMs should help to reach a consensus on the best measures to use in a particular population.
Lastly, the necessary infrastructure should be in place to respond to the symptoms and treatment burden that patients report through PROMs. It’s pointless to collect PROMs if no action is taken when patients disclose their concerns, so building an experienced and skilled workforce who can respond adequately is essential. For many long term conditions this means embedding effective links to other relevant clinical services. People with long term conditions often have multimorbidity, even at a younger age, which raises their risk of poor physical and mental health outcomes.14 Healthcare teams treating the original condition should ensure that they have established referral pathways to other specialist services that tackle multiorgan involvement, together with adequate psychological or psychiatric support to help patients who are experiencing mental health difficulties.
Given the potential benefits of PROMs for the mental and physical health of people with long term conditions, there’s a strong case for incorporating these measures into routine clinical care. This will require a phased rollout to ensure that the right PROMs are selected for the target population and that adequate infrastructure is in place to tackle the problems patients raise. As the number of people with long term conditions is predicted to rise, we would be wise to implement an approach that has the potential to improve their mental and physical health.
Acknowledgments
We thank Professor Katharine Barnard for facilitating the interactions between the authors.
Footnotes
Competing interests: We have read and understood the BMJ Group policy and declare the following interests:
RA received institutional research grants, honorariums, education support, or consulting fees from Abbott Diabetes Care, AstraZeneca, Bayer, Boehringer Ingelheim, Eli Lilly, Menarini Pharmaceuticals, and Novo Nordisk and was deputy chair of Diabetes Research Group-2 until December 2023 (no conflict of interest directly related to this work). ED has nothing to declare. RH received fees for lecturing from EASD, Eli Lilly, Encore, Liberum, Novo Nordisk, and ROVI and funding for conference attendance from Novo Nordisk and Eli Lilly. RH is chair of the European Association for the Study of Diabetes Committee for Clinical Affairs (no conflict of interest directly related to this work). DM has no conflict of interest to declare.
Provenance and peer review: Not commissioned; not peer reviewed.