Dr Liesbeth van Vliet, Research Fellow EURO IMPACT at the Cicely Saunders Institute at King’s College London; Dr Richard Harding, Reader in Palliative Care at the Cicely Saunders Institute at King’s College London, and Prof Irene Higginson, Director of the Cicely Saunders Institute and Professor of Palliative Care and Policy, King’s College London, outline recently published decision support and accompanied guidance on implementing the Palliative care Outcome Scale and related Patient Reported Outcome Measures in clinical care.
Patients’ and their family caregivers’ symptoms and concerns are central in the provision of person-centred palliative care. Clinicians often underestimate the extent of patients’ and families’ problems, unless they ask directly. This can be done using Patient Reported Outcome Measures (PROMs). One of the most widely used PROMs in palliative care is the Palliative care Outcome Scale (POS) family of measures. This multidimensional measure, originally developed by Prof Irene Higginson, covers all domains of palliative care. It has a patient and family caregiver version, is short, easy to administer, and validated in many languages. See the Box for an example of a POS item.
There are currently over 5,500 registered POS users in almost 100 countries. POS users have free access to a wide range of materials (e.g. language translations). However, during one of our POS training days, we found that clinicians sometimes experienced difficulties with responding to scores on the POS items of information needs, family anxiety, and patient depression while breathlessness is also a difficult to treat symptom.
Therefore, as part of the EU-funded EURO IMPACT project, we decided to create more decision support on how to respond to scores on these specific POS items. To do so, we drafted several recommendations on how to respond to these symptoms based on the available literature. Patient representatives, professionals and researchers from all over the world rated the appropriateness of these recommendations for all POS item scores. Using a Delphi methodology we were able to draft an evidence-based, expert consensus Decision Support Tool on how to respond to patients and family caregivers who experience several degrees of information needs, family anxiety, depression, and breathlessness.
Some key recommendations are:
- Good patient care, psychosocial support and empathy, and open communication are important for all POS items and all severity of symptoms.
- When problem scores increase proper assessment of symptoms is recommended.
- For increasing scores, non-pharmacological interventions are recommended, and pharmacological interventions for high levels of breathlessness and depression.
More detailed recommendations for the different symptoms and their POS scores can be found here. It should be noted that the provided recommendations are not prescriptive, but aim to help clinicians think through the different options when they encounter these complex symptoms.
In order to help successful implementation of PROMs in clinical care, we developed alongside our Decision Support Tool guidance on PROM implementation. This guidance was created based on previous literature and in collaboration with members of the EAPC Task Force on Outcome Measurement. An 8-step implementation guide was developed, from identifying the goals for measuring PROMs via selecting a questionnaire, to evaluating the impact of measuring PROMs on practice.
In conclusion, this study aims to provide further impetus for implementing PROMs, such as POS, in clinical care, and responding to identified issues within the domains of information needs, family anxiety, depression and breathlessness. It is ready to be further refined and tested, in order to improve patients’ and family caregivers’ outcomes in the most threatening times.
Links and resources
- Van Vliet LM, Harding R, Bausewein C, Payne S, Higginson IJ, EUROIMPACT. How should we manage information needs, family anxiety, depression, and breathlessness for those affected by advanced disease: development of a Clinical Decision Support Tool using a Delphi design. BMC Medicine 2015, 13:263 doi:10.1186/s12916-015-0449-6. Download a free copy of the article.
- POS registration and full resources available here.
- EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Download a free copy of the article.
- Read earlier posts about EURO IMPACT on the EAPC Blog.
More about EURO IMPACT…
EURO IMPACT – European Intersectorial and Multidisciplinary Palliative Care Research Training – is funded by the European Union Seventh Framework Programme (FP7/2007-2013, under grant agreement number (264697). EURO IMPACT aims to develop a multidisciplinary, multi-professional and intersectorial educational and research training framework for palliative care research in Europe. EURO IMPACT is coordinated by Prof. Luc Deliens and Prof. Lieve Van den Block of the End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgium.
Other partners are VU University Medical Center, EMGO Institute for Health and Care Research, Amsterdam, the Netherlands; King’s College London, Cicely Saunders Institute, London, Cicely Saunders International, London, and International Observatory on End-of-Life Care, Lancaster University, Lancaster, United Kingdom; Norwegian University of Science and Technology, and EAPC Research Network, Trondheim, Norway; Regional Palliative Care Network, IRCCS AOU San Martino–IST, Genoa, and Cancer Research and Prevention Institute, Florence, Italy; EUGMS European Union Geriatric Medicine Society, Geneva, Switzerland; Springer Science and Business Media, Houten, the Netherlands.