Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care

Abstract

Purpose Patient-reported outcome measurement (PROM) plays an increasing role in palliative and end-of-life (EOL) care but their use in EOL care and research remains varied and inconsistent. We aimed to facilitate pan-European collaboration to improve PROMs in palliative and EOL care and research. Methods The study includes a workshop with experts experienced in using PROMs in clinical care and research from Europe, North America, and Africa. Information from

Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews

“…The European survey identified more than 100 different outcome measures in palliative care research, but 94 of these were used fewer than 10 times [32]. There is a need for standardisation around the few best validated short scales which are widely used, perhaps with core and add on modules [33], so that in the future results from studies may be pooled.…”

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

“…Using existing measures therefore helps ensure the best use of research funds for the field of palliative care. 9,62 For research, a battery of outcome measures is often used. This potentially burdens the patient with questionnaire fatigue especially towards the end of life.…”

Capture, Transfer, and Feedback of Patient-Centered Outcomes Data in Palliative Care Populations: Does It Make a Difference? A Systematic Review

“…4 However, one of the important challenges to their use in palliative care is that a proportion of palliative care patients have impaired cognition and/or are too unwell to complete outcome measures themselves. This varies by setting: In a hospice study, 57% of patients required help in completing outcome measures, 5 and in some conditions, such as end-of-life care in patients with advanced dementia or those otherwise unable to communicate, self-reporting is virtually impossible.…”