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. 2019 Sep;33(8):1058-1068.
doi: 10.1177/0269216319854154. Epub 2019 Jun 12.

Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique

Susanne de Wolf-Linder  1   2 , Marsha Dawkins  2 , Francesca Wicks  3 , Sophie Pask  4 , Kathy Eagar  5 , Catherine J Evans  2 , Irene J Higginson  2 , Fliss E M Murtagh  2   4
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Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique

Susanne de Wolf-Linder et al. Palliat Med. 2019 Sep.

Abstract

Background: When 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.

Aim: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured.

Design: An 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/participants: In 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.

Results: Participants' 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.

Conclusion: The 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.

Keywords: Palliative care; consensus; patient outcome assessment; patient reported outcome measures; quality indicators.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Synthesis of comments in relation to question 2.
See this image and copyright information in PMC

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