Prof Claudia Bausewein, Director of the Department for Palliative Medicine at Munich University Hospital and Chair in Palliative Medicine at Munich University; Dr Barbara Daveson, Cicely Saunders International Lecturer in Health Services Research in Palliative Care, and Prof Irene Higginson, Director of the Cicely Saunders Institute at King’s College London, and Professor of Palliative Care and Policy, King’s College London, UK, introduce a recently published EAPC White paper.
Patients and families’ concerns are in the focus of all palliative care professionals with the aim to reduce burden and relief suffering. Therefore, one of the most important tasks for a clinician is to work out whether or not they have really addressed the concerns of their patients. While for researchers it can be hard to find the right measure to use to adequately investigate their research topic. Outcome measurement can help with both of these challenges. These two factors are some of the reasons behind why outcome measurement, especially patient-reported outcome measurement (PROM), is gaining increasing attention in palliative care. PROM feedback improves awareness of unmet need. It helps staff act to address patients’ needs, and also measure the difference they make. Also, outcome measurement is central to understanding different models and commonalities of care across countries and patient complexity. Given these benefits, the EAPC (European Association for Palliative Care) Task Force on Outcome Measurement, a group of 14 professionals from 11 countries, including medical, nursing and allied health disciplines, developed the EAPC White paper on ‘Outcome Measurement in Palliative Care: Improving Practice, Attaining Outcomes and Delivering Quality Services’. 1
The essential parameters of outcome measurement for both clinical practice and research are covered in this White paper, helping to firmly secure its place on any essential reading list. Examples of the recommendations include:
• Measures used in palliative and end-of-life care should be suited to the clinical task and the clinical work.
• Valid and reliable multidimensional outcome measures for patients and their family (unpaid caregivers), which have sound psychometric properties and allow for proxy assessment, should be used.
• Measures used in research should be relevant to the research question, but patient burden must also be considered when using measures in palliative and end-of-life care research.
• When outcome measures are introduced into routine clinical practice, change management principles should be used with facilitation and communication of the implementation process remaining central to this process. An evaluation of the implementation process to ensure sustained use that penetrates practice within the organisation should take place.
• As outcome measurement relates to the individual situation of patients, it should inform quality indicators that measure specific aspects of care in a population.
• To sustain routine practice of outcome measurement, quality improvement systems should be established and interoperable electronic systems used.
• Comparisons across care settings and throughout Europe will become possible if outcome measures are used widely, and this would help progress the field of palliative care. Therefore, measures that are culturally sensitive and those that have been validated in relevant languages and countries should be used. National and international outcome collaborations should be established to advance the field and allow benchmarking to establish and improve care standards.
• Policy makers should recommend routine collection of outcome data as this will help improve and monitor palliative care practice. Routinely collected data should be used to establish a minimum dataset of palliative care outcome measures to improve and advance clinical care and research.
There are already a number of recommendations on outcome measurement. Most of them relate to outcome measurement in research but this White paper focuses more on outcome measurement in clinical care and aspects of the wider policy impact of implementing outcome measurement in clinical palliative care. We hope that this White paper helps clinicians, researchers, policy makers and managers with their clinical practice, research, and also when implementing outcome measures more broadly within a service, an organisation or a region.
1. Bausewein C et al. 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. Palliat Med. Published online before print June 11, 2015.
Download a free copy of the EAPC White paper
Click here to download a copy of ‘Outcome Measurement in Palliative Care: Improving Practice, Attaining Outcomes and Delivering Quality Services’ from the EAPC website.