• Susanne de Wolf-Linder, Marsha Dawkins, Francesca Wicks, Sophie Pask, Kathy Eagar, Catherine J Evans, Irene J Higginson, and MurtaghFliss E MFEM0000-0003-1289-37262 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.4 Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK..
• 1 School of Health Professions, Institute of Nursing, Zurich University of Applied Sciences, Winterthur, Switzerland.
• Palliat Med. 2019 Sep 1; 33 (8): 105810681058-1068.

BackgroundWhen capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden.AimTo determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured.DesignAn international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1-5, lowest to highest priority) of domains. Participants' rationales for their choices were analysed thematically.Setting/ParticipantsIn all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016.ResultsParticipants' years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were 'overall wellbeing/quality of life' (2.75), 'pain' (2.06), and 'information needs/preferences' (2.06), respectively. The palliative measure 'Phase of Illness' was recommended as the preferred measure of time period over which the domains were measured.ConclusionThe domains of 'overall wellbeing/quality of life', 'pain', and 'information needs/preferences' are recommended for regular measurement, assessed using 'Phase of Illness'. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.

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