Standing on the shoulders of giants – a brief, patient- and proxy-reported outcome measure in advanced illness

THIS MONTH’S EDITOR’S CHOICE FROM ‘PALLIATIVE MEDICINE’…

Fliss Murtagh is Professor of Palliative Care and Associate Director of the Wolfson Palliative Care Research Centre, and Academic Training Programme Director – North & East Yorkshire and Northern Lincolnshire, UK. Here, she explains the background to a longer paper published in the September issue of ‘Palliative Medicine’, which she describes as a work that ‘stands on the shoulders’ of many people.

Professor Fliss Murtagh

We are delighted to hear that our recent paper ‘A Brief, Patient- and Proxy-Reported Outcome Measure in Advanced Illness: Validity, Reliability and Responsiveness of the Integrated Palliative Care Outcome Scale (IPOS)’ has been selected as ‘Editor’s choice’ for the September 2019 issue of Palliative Medicine.

This paper tests (validates) a brief measure (called IPOS) that assesses the main symptoms and concerns of people with advanced illness. At first sight, a paper on ‘testing a measure’ may not sound very exciting. After all, what does this have to do with improving care? Yet this work has everything to do with improving care!

First, how do we know our care is good? Answer: we have to demonstrate this by showing a positive impact on the outcomes important to those with advanced illness, and by ensuring a good experience of care. IPOS is an outcome measure and not an experience measure – so it addresses the first of these (experience measures are needed too).

Second, how can we best manage and improve our services? Answer: we cannot manage what we do not measure – and most measures of the quality of services have relied on measuring the processes, rather than the results (or outcomes) of care. So we have measured things like number of beds or staff, bed occupancy, length of stay, people seen by a service – all metrics that show what we do, but not how well (or poorly) we do it!

So this paper is critically important. It tests IPOS – both the patient self-report version and the staff proxy-report version (when people are too ill to self-report). In brief, we asked:

  • Does IPOS measure what we intended? Yes, it does; there are three underlying constructs, of physical symptoms, emotional symptoms and communication/practical issues.
  • Does IPOS behave as expected? Yes, it scores much the same if it is re-scored later and symptoms/concerns are unchanged.
  • Do patient and staff versions correspond? Yes, for most items, the patient and staff versions correlate well.
  • And most important, do changes in the IPOS score reflect meaningful changes for the patients? Yes; if the IPOS score goes down then patients report that things are better, and when it goes up they report that things are worse.

IPOS is already being widely used, in the UK and internationally. It is different from symptom scores, because it extends beyond symptoms to include other concerns important for patients (information and communication, family concerns, practical matters, and existential or spiritual concerns).

IPOS is freely available and can be downloaded from www.pos-pal.org  It is also increasingly available in different languages – all available from the website.

In 1676, Isaac Newton wrote “If I have seen a little further, it is by standing on the shoulders of giants.” This work ‘stands on the shoulders’ of many people:

  • Patients and families who provided interviews and feedback about what mattered most to them, in early qualitative studies, in feedback on use of POS, and through our Patient and Public Involvement groups – IPOS is completely underpinned by what they had to say.
  • Irene Higginson, who has pioneered and led work on the Palliative Care Outcome Scale (POS) for many years, long before outcome measures came to the forefront of health care.
  • Christina Ramsenthaler, whose insights into the complexities of psychometrics were invaluable and essential for the paper.
  • Not least, the 376 patients and 161 staff who worked hard to complete IPOS and other measures for this study, often when unwell or busy delivering care.

A huge thank you to all the co-authors, whose patience has been outstanding and without whom this paper would not have been written.

DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’ (Open access)

This post relates to the longer article,A Brief, Patient- and Proxy-Reported Outcome Measure in Advanced Illness: Validity, Reliability and Responsiveness of the Integrated Palliative Care Outcome Scale (IPOS) by Murtagh FE, Ramsenthaler C, Firth A, Groeneveld E, Lovell N, Simon ST, Denzel J, Guo P, Bernhardt F, Schildmann E, van Oorschot B, Hodiamont F, Streitwieser S, Higginson IJ, Bausewein C., published in Palliative Medicine 2019 Volume: 33 issue: 8 page(s): 1045-1057. Article first published online:12 June 2019 (doi: 10.1177/0269216319854264). Issue published: 1 September 2019.

Links

EAPC members can download this, and all other ‘Editor’s choice’ articles free of charge

If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

This entry was posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH and tagged , . Bookmark the permalink.

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