Maximising the impact of patient reported outcome assessment for patients and societyBMJ 2019; 364 doi: https://doi.org/10.1136/bmj.k5267 (Published 24 January 2019) Cite this as: BMJ 2019;364:k5267
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We are delighted with the BMJ’s continued efforts to keep PROMs on the healthcare agenda and read with great interest Calvert and colleagues’ helpful Analysis article on patient reported outcomes measures (PROMs). We support the authors’ position that PROMs have the potential to be an important component of healthcare decision making when used appropriately 1. However, we believe the article omitted some important considerations, which perhaps could have been included in their Box 1 (Current Challenges in PROM assessment). One drawback is that the majority of currently available PROMs were originally developed and validated for use in group-level research studies. Thus, their use at the individual patient-level cannot be justified.
The reasons for this are well documented 2-5 and include issues relating to design 6, methodology 5, statistics 7 and clinical interpretability 8. Importantly, newer psychometric methods 9 can help overcome the limitations of traditional methods used to develop PROMs 10, and can deliver defensible individual-level patient measurement 11. A second consideration is that, although there are good examples of the use of PROMs cited in the Analysis article, it has been argued that providing PROMs feedback to individual users (both clinicians and patients) can be complex and not easy to implement 12-14. Thus, these multi-level complexities need to be factored into planning large scale implementation of PROMs.
Ultimately, PROMs have huge potential. But the consideration that many existing PROMs are ready for use in high stakes clinical decision making may be premature 15. Innovation is required if they are to be leveraged into a central role in healthcare systems articulated through evidence-based measurement and better dialogue between policy makers, regulators, clinicians, patients, and psychometric methodologists.
1. Browne J, Cano S, Smith S. Using patient-reported outcome measures to improve healthcare: time for a new approach. Medical Care 2017;55(10):901-04.
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4. Nunnally JC, Bernstein IH. Psychometric theory. 3rd ed. New York: McGraw-Hill 1994.
5. Wright B. A history of social science and measurement. Educational measurement: issues and practice 1997(Winter):33-52.
6. Cano S, Hobart J. The problem with health measurement. Patient preference and adherence 2011;5:279-90
7. McHorney CA, Tarlov AR. Individual-patient monitoring in clinical practice: are available health status surveys adequate? Quality of Life Research 1995;4:293-307.
8. Grimby G, Tennant A, Tesio L. The use of raw scores from ordinal scales: time to end malpractice? J Rehabil Med 2012;44(2):97-98.
9. Andrich D. Advances in social measurement: A Rasch Measurement Theory. In: Guillemin F, Leplege A, Briancon S, et al., eds. Perceived Health and Adaptation in Chronic Disease. New York: Routledge 2018.
10. Hobart J, Cano S. Improving the evaluation of therapeutic interventions in multiple sclerosis: the role of new psychometric methods. Health technology assessment (Winchester, England) 2009;13(12):iii, ix-x, 1-177. doi: 10.3310/hta13120 [published Online First: 2009/02/17]
11. Cano S, Pendrill L, Barbic S, et al. Patient-Centred Outcome Metrology for Healthcare Decision-Making. Journal of Physics: Conference Series 2017;(in press)
12. Boyce M, Browne J. Does providing feedback on patient-reported outcomes to healthcare professionals result in better outcomes for patients? A systematic review. Qual Life Res 2013;22:2265-78.
13. Boyce M, Browne J, Greenhalgh J. Surgeon’s experiences of receiving peer benchmarked feedback using patient-reported outcome measures: a qualitative study. Implementation Science 2014;9:84.
14. Boyce M, Browne J, Greenhalgh J. The experiences of professionals with using information from patient-reported outcome measures to improve the quality of healthcare: a systematic review of qualitative research. BMJ Qual Saf 2014;23:508-18
15. Coulter A. Measuring what matters to patients. BMJ 2017;356:j816.
Competing interests: Stefan Cano is a co-founder of Modus Outcomes.
This is a fine summary of progress with patient-reported outcome measures (PROMs) and illustrates many of the issues that need to be addressed, including the need for a governance framework.
PROMs needs be thought of as complete end-to-end systems, with greater focus on how results will be used. Scores need to be more comparable by using common scales, such as 0-100, with a high score always being good. Results need to be available immediately to decision-makers, using interactive data visualisation dashboards for individuals and cohorts.
Most existing PROMs are condition-specific and were developed independently, leading to a proliferation of over-lapping questionnaires. Respondent burden, ease of use and inclusivity all point towards brevity and a low reading age. Problems are exacerbated when people have multiple conditions. However, most patients and clinicians seek the same results, so there is a strong case for generic (condition-independent) PROMs focusing on what really matters.
Personalised care is based on what matters to people and their individual strengths and needs. PROMs should adopt a broad holistic view, not just health-related quality of life. For example, the PROMs family developed by R-Outcomes includes: (a) Needs, including health status, wellbeing, confidence, loneliness, sleep and fatigue; (b) Treatment, including self-care, medication adherence and acceptance of loss; (c) Experience of specific services, integration across the system and shared decision-making, (d) Social factors including social determinants of health, social capital with neighbours and relational coordination between staff groups, and (e) Innovations, including behaviour change, innovation readiness, innovation adoption process, user satisfaction and digital confidence.
Competing interests: I am responsible for having developed a family of short generic PROMs and PREMs, which are marketed through R-Outcomes Ltd. I am a shareholder in R-Outcomes Ltd.
Re: Maximising the impact of patient reported outcome assessment for patients and society
This is a timely reminder by the authors on the pros and cons of using Patient Rated Outcome Measures. The biggest hurdles though are innovation and use of smart IT within NHS and the lack of such applications within existing systems in use. Sadly, though examples of such innovation outside NHS are common, their uptake and integration remains tardy and costly.
Competing interests: Clinical Lead for Patient-Tracker PROMS Application - https://camhsiapt.wordpress.com