Patient reported outcome measures: What are they useful for in palliative care?

An article written by Dr Ollie Minton and Associate Professor Aileen Collier

In an ideal world we would seamlessly capture the patient experience in real time with feedback to patient, family, and clinicians. We would then use this to drive improvement, commissioning and use the aggregated data for research and service development. We are like any other speciality in our need to try and do this but with added dimensions around death and dying. At the same time recognising we are behind other areas in terms of evidence base and resources to do so.

As we feel this is not the current state of play, we conducted a focused review examining and interpreting the literature to draw out aspects of patient reported outcome measures within palliative care (PROMS-PC). We would encourage you to read the full open access paper [1] but will provide you all with a few highlights and summary.

Overall, we wanted to ask the following questions of PROMs-PC in Practice.

Red-tape or value-add?

We wanted to draw these questions out as we recognise that often PROMS-PC are a proxy measure and used in various connotations. They often do not capture the non-physical and complex nature of multidisciplinary and holistic care. We recognise the value of a measurement but not at the expense of simply ticking a box or attempting to distil an outcome measure to allow for benchmarking.

We are unsure of the purpose of such widespread adoption without a clear evidence base and the tendency of clinicians and services to demonstrate the aspects of good care, and indeed good living and dying and after death care, which many of the PROMS-PC cannot capture.

Measuring bodies, accommodating persons?

Families and friends value effective communication, continuity of care, shared decision-making, and trust and confidence in clinicians in a caring environment. PROMS-PC struggle to capture these, despite capturing the management of symptoms and symptoms observed by relatives as not managed effectively. The order of importance may be interchangeable, but many aspects of care (and poor care) will not necessarily be captured or reflected in PROMS-PC scores.

Are we measuring what we think we are measuring?

We argue that reducing outcomes to what we can measure can, in turn, further medicalise death and dying. We very much do not want to keep reducing the nature of palliative care interventions to what we can fix or measure to keep aligned with other areas of medicine or surgery. We do not have a sufficient evidence base at present to promote unified PROMS-PC, nor would we at the present time suggest this is an effective use of resources or academic pursuit. We do not want the focus on what can be measured to take away from innovation or wider societal and cultural aspects of death and dying. We very much think that the current focus on PROMS-PC in their current format will reduce the focus on person-centred care which we all strive for in our clinical practice, whatever discipline you work in.

While overall we want to promote the use of PROMS-PC, at the present time, we feel there are inherent difficulties that mask the complexities of the process and could have further unintended consequences, especially around funding and design of services.

We would of course welcome any debate around the use of these measures and would encourage everyone to reflect how best we could do this in the future including the research agenda. If palliative care really is ‘everyone’s business’, then we need to ensure we understand how PROMs-PC is best implemented and for whom. For example, in Australia, only 40% people who could benefit from specialist palliative care receive it.

Reference

Collier A, Spruijt O, Minton O, Broom A. Patient-reported outcome measurement in palliative care: A hermeneutic narrative review. Palliat Support Care. 2023 Jun 23:1-8.
 

Author

Dr Ollie Minton PhD FRCP FHEA

Clinical lead for palliative medicine & cancer management team

University Hospitals Sussex

Associate Professor Aileen Collier RN PhD

A/Prof Palliative Care and Aged Care Nursing

Research Centre for Palliative Care, Death and Dying (RePaDD)