Patient Reported Outcome Measures: how useful are they in practice?

Posted Jun 15, 2012

Patient Reported Outcome Measures (PROMs) show promise for driving forward service improvement and the agenda for patient-centred care. Practice nurses need to become involved in their development and use.

At the heart of nursing practice and the reason most (if not all) of us entered and remain in the profession is a desire to make people 'feel better'. Over the years there have been many nurses who have questioned whether treatments, plans for care, intervention or support for behaviour change are sufficiently driven by the patient's perceptions of what makes them feel better or have a good 'quality of life'. Patient Reported Outcome Measures (PROMs) aim to measure patients' perceptions and address their agendas.

At the centre of the Department of Health 'High Quality Care for All NHS Next Stage Review'¹is this key message that refers directly to the intended use PROMs:

'Effectiveness of care...means understanding success rates from different treatments for different conditions. Assessing this will include clinical measures such as mortality and survival rates and measures of clinical improvement. Just as important is the effectiveness of care from the patients' own perspective which will be measured through patient reported outcome measures...'

PROMs became a required measure for Primary Care Trusts could establish an aspect of the quality of some of the services they contracted for, in 2009. 2Specifically this requirement included only unilateral hip replacement, unilateral knee replacement, groin hernia surgery and varicose vein surgery. Clearly these surgical interventions make up only a fraction of healthcare provision, and there are many more PROMs that are specific to other areas of healthcare. In 2010, the Department of Health acknowledged that further work was needed:

'At present, PROMs, other outcome measures, patient experience surveys and national clinical audit are not used widely enough. We will expand their validity, collection and use. The Department will extend national clinical audit to support clinicians across a much wider range of treatments and conditions, and it will extend PROMs across the NHS wherever practicable.'³

The aim of this article is to increase appreciation of the potential of PROMs, the prerequisites for their use and to help you understand some of the practical issues involved, so that you are encouraged to become involved in moving this agenda forward.

WHAT ARE PROMs?

PROMs are measures of a patient's health status or health-related quality of life. They are usually self-completed questionnaires that measure health status or health related quality of life at a single point in time. The health status information collected from patients by way of PROM questionnaires, before and after an intervention such as those mentioned previously, can then be compared in order to provide an indication of the outcomes or quality of care delivered. Recently, a variety of companies have harnessed technology in developing innovative methods of facilitating patients' completion of PROMs. There is also ongoing work looking at the completion of PROMs at multiple, rather than fixed points in time, so that their inclusion in care planning can be continuous and hence more useful in long-term conditions.^4-6

PROMs are divided into three different types:

General health, or generic measures,
Disease-specific measures
Functional status measures.

General health measures

These include measures such as the EQ-5D (EuroQol 5 Dimension Health Status questionnaire)⁷and the SF-36 (36-item Short Form Health Survey).⁸ These have been widely used across populations and can give useful information about the relative impact of diseases within a variety of settings. They have limited use, however, in some patient groups, where the questions are too general and do not highlight the particular aspects of quality of life that are important and relevant for patients living with those conditions. Interestingly the PROMs utilised as required measures for the surgical procedures mentioned previously include, in the main, both generic and condition-specific questionnaires. (Table 1)

Disease specific measures

These have usually been developed with patients with the specific disease in question, such as the Chronic Obstructive Pulmonary Disease (COPD) Assessment Test (CAT),5 and have the advantage of containing questions of particular relevance to them and the condition. They are therefore more sensitive to aspects of life affected by that condition and will allow detection of more subtle changes in status.

Functional measures

These do not focus on quality of life aspects, and are often used in combination either with disease-specific measures or generic measures. Many of the functional measures were developed to support rehabilitation processes and to illustrate treatment outcomes. One of the first to be developed in the 1960s was the Barthel Index 12 which looks at the activities of daily living. Others include the FIM and/or FAM (Functional Independence Measures/Functional Assessment Methods), used to assess physical and cognitive functioning in the elderly.¹³

PROMs PILOT PROJECT

Oxford University has been commissioned by the Department of Health Policy Research programme to evaluate the feasibility and acceptability of using PROMs for long term conditions in primary care. Details of the project can be viewed via the link: http://www.publichealth.ox.ac.uk/research/hsru/promspilot/generalinfo

The conditions under review in the current project are:

Asthma
COPD
Diabetes
Epilepsy
Heart Failure
Stroke.

The study involves interviews with individuals with a long-term condition as well as applying the PROMs under review. It also involves professional stakeholders in primary care.

The University has electronic links to existing reviews of PROMs for a range of conditions such as cancers (lung, colorectal, breast, prostate), elective procedures (elective cardiac procedures, gynaecological procedures), mental health (anxiety and depression) and long-term conditions (asthma, epilepsy, chronic kidney disease, diabetes, stroke, COPD, PROMs and children, and heart failure). These can be accessed via the link: http://phi.uhce.ox.ac.uk/newpubs.php

USING PROMs

The development of PROMs and interest in their use is escalating. Articles from the last three years have looked at the need for and use of PROMs in areas as disparate as palliative care,14 chronic fatigue syndrome,15 and ankylosing spondylitis.¹⁶Last year's Royal College of Nursing policy briefing 17 and Kings Fund guidance document18 both exhort nurses and other professionals to learn about PROMs and get involved.

The Kings Fund¹⁸ suggests that PROMs can be used singly or in combination, for a variety of reasons, and in a number of different ways. They can be used as outcome measures in clinical trials, health service research and surveys of the population. They can also be used to inform patient care at an individual level and in terms of organisation of care across care provision boundaries. The timing of their use depends on their function. They can be used to plan care and discuss options - at the beginning of a patient/clinician relationship or following a new diagnosis - and then repeated to continue that process, particularly in long- term conditions. They can be used pre- and post-operatively to:

Demonstrate patient reported improvement following the procedure
Compare providers
Ensure quality
Initiate dialogue between clinical teams and commissioners.

To use PROMs confidently you will need to be familiar with what they look like and how it feels to use them. The two most commonly used generic PROMs are the EQ-5D and SF-36.

The SF-36 has 36 items in eight domains, (Box 1) from which answers can be selected from different domains. It takes only a few minutes to complete. Nurses who use this measure are often surprised about how helpful it is in terms identifying issues of particular importance to patients and for focussing care planning towards those aspects.

There are a large number of disease-specific outcome measures available. One such is the CAT test for COPD.⁵The CAT questions are very specific to the problems experienced by COPD patients. Its questions cover cough, phlegm, chest tightness, breathlessness, limitation on activity, confidence, sleep and energy levels. This sort of validated and structured approach is more meaningful than a general question such as, 'How is your breathing?' or (even worse) 'How are you getting along?', and will provide openings for a conversation that allows for a breadth of therapeutic options.

PROS AND CONS

The intention of PROMs can be seen to be positive - to improve the match between care provision, treatment and patient relevant outcomes, and along the way to develop a model of providing and evaluating care that enables the patient to be a partner in that process in a demonstrable fashion. There are however some obstacles to their implementation in practice. As has been observed by the Oxford group, there are a number of professionals who remain to be convinced of their value.

PROMs need to be straightforward to apply - not too long or not too complex to derive a score from. In addition there is work to be done to make PROMs more user-friendly, perhaps by incorporating visual analogues, or developing IT-supported versions. A list of the desirable, pragmatic attributes for a PROM have been suggested.¹⁸(Box 2) This list of attributes means that the PROM should have been developed with patients, with an explicit theory underpinning its construction, and rigorous testing and alteration to make sure that it is both consistent and sensitive to changes in the domains included.

The rationale for the use of PROMs is based on a number of assumptions (Box 3). The end result, greater patient satisfaction with their care, assumes that multiple processes occur, and that the outcome measure being used was developed in collaboration with patients, and that the instrument itself is scientifically robust, and sufficiently specific and sensitive.¹⁹Equally important is consideration of who will apply the PROM: there is evidence that nurses are the most appropriate clinicians to undertake the use of a PROM and that they are more likely to have a positive attitude to using the information gathered than their medical colleagues.²⁰

The understanding that clinicians have about what degree of change in the PROM results should prompt a review or change in some aspect of treatment is uncertain. There is a risk that scoring might become mechanistic, with healthcare professions focussing on the PROM score itself, rather than using the information it conveys to improve patient outcomes. Furthermore, education about the PROM on its own does not prompt its use.²¹What really seems to encourage their use is to involve practitioners in identifying what the barriers are for implementation in their own practice community.²²

CONCLUSION

PROMs are going to be a fact of life in all areas of the NHS and will be implemented in a variety of ways. It is possible that in some practice areas the type and nature of the PROM introduced will be enough to prompt its use. In others it could be more important to identify practical ways of implementing a PROM in the face of competing priorities. Some practitioners with a healthy scepticism about the construction of PROMs and their validity may wish to become involved in their development and evaluation for the future. At the very least, nurses in general practice will need to familiarise themselves with the PROMs that are pertinent to the patients in their care and be enabled to embed some of them into templates or audits of care.

Care that addresses the patient's agenda and is driven by their perceptions of what makes them feel better and gives them a better quality of life is the basic objective of nursing practice and the main vision for continued improvement in health service provision in the UK. PROMs are one method of finding out if we have achieved those objectives.

REFERENCES

1. Department of Health. 'High Quality Care for All: NHS Next Stage Review Final report. June 2008.http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_085828.pdf

2. Department of Health. Guidance on the routine collection of PROMS. 2009.http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_092647

3. Department of Health. (2010) Equity and excellence; Liberating the NHS. 2010.http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_117794.pdf

4. My Clinical Outcomes https://www.myclinicaloutcomes.co.uk/about-us.aspx

5. COPD Assessment Test http://www.catestonline.co.uk/

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7. EoroQol Group. A new facility for the measurement of health-related quality of life. Health Policy 1990;16:199-208

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10. Dawson J, Fitzpatrick R, Murray D, Carr A. Questionnaire on the perceptions of patients about total knee replacement. J Bone Joint Surg Br.1998;80(1):63-9

11. Smith JJ, Garratt AM, Guest M, Greehalgh RM, Davies AH. Evaluating and improving health-related quality of life in patients with varicose veins. Journal of Vascular Surgery 1999;30(4): 710

12. Mahoney Fl, Barthel DW. Functional evaluation: the Barthel Index. Maryland State Medical Journal 1965;14(2):56-61

13. Turner-Stokes L, Nyein K, Turner-Stokes T et al. The UK FIM+FAM development and evaluation. Journal of Clinical Rehabilitation 1999;13:277-87

14. Bausewein C, Simon ST, Benalia H et al. Implementing patient reported outcome measures (PROMS) in palliative care - users' cry for help. Health and Quality of Life Outcomes 2011;9:27 doi:10.1186/1477-7525-9-27 http://www.hqlo.com/content/9/1/27

15. Haywood KL, Staniszewska S, Chapman S. Quality and acceptability of patient reported outcome measures used in chronic fatigue syndrome/myalgic encephalitis (CSF/ME); a systematic review. Quality of Life Research 2012;21(1):35-52 DOI: 10.1007/s11136-011-9921-8

16. Haywood KL, Garratt AM, Jordan KP, Healey EL, Packham JC. Evaluation of Ankylosing Spondylitis Quality of Life (EASi-QoL); reliability and validity of a new patient reported outcome measure. Journal of Rheumatology 2010;37(10):2100-2109

17. Royal College of Nursing. PROMS; Patient reported outcome measures - the role, use and impact of PROMS on nursing in the English NHS. 2011 http://www.rcn.org.uk/__data/assets/pdf_file/0009/355248/1.11_PROMs.pdf

18. Devlin N, Appleby J for the Kings Fund. Getting the most out of PROMS; putting health outcomes at the centre of NHS decision- making. 2011 http://www.kingsfund.org.uk/publications/proms.html

19. Weaver M, Patrick DL, Markson LE et al. Issues in the measurement of satisfaction with treatment. The American Journal of Managed Care 1997;3(4):579-94

20. Greenhalgh J, Long A, Flynn R. The use of patient reported outcome measures in clinical practice: lack of impact or lack of theory? Social Science & Medicine 2005;60:833-843

21. Baars R, van der Pal S, Koopman HM, Wit, J. Clinicians' perspective on quality of life assessment in paediatric clinical practice. Acta Paediatrica 2004;93(10):1356-62. doi: 10.1111/j.1651-2227.2004.tb02937.x

22. Law M, King G, Russell D, MacKinnon E, Hurley P, Murphy C. Measuring outcomes in children's rehabilitation; a decision protocol. Archives of Physical Medicine and Rehabilitation 1999;80(6):629-636

23. Meadows KA, Twidale F, Rogers B. Action research - a model for introducing standardised health assessment in general practice; an exploratory study. Journal of Evaluation in Clinical Practice 1998;4(3):225-9