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Close person spill-overs in end of life care : using hierarchical mapping to identify whose outcomes to include in economic evaluation

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Canaway, Alastair, Al-Janabi, Hareth, Kinghorn, Philip, Bailey, Cara and Coast, Joanna (2019) Close person spill-overs in end of life care : using hierarchical mapping to identify whose outcomes to include in economic evaluation. PharmacoEconomics, 37 . pp. 573-583. doi:10.1007/s40273-019-00786-5 ISSN 1170-7690.

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Official URL: https://doi.org/10.1007/s40273-019-00786-5

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Abstract

Background
Guidelines for economic evaluations often request that costs and outcomes beyond the patient are captured; this can include carers and also other affected parties. End-of-life care is one context where impacts of care spill over onto those other than patients, but there is little evidence about who should be included within economic evaluations.

Objective
The purpose of this article was to examine (1) how many people are close to those at the end of life (2); their characteristics; and (3) what influences the network size at the end of life.

Methods
In-depth interviews were conducted with 23 participants who were either recently bereaved or had somebody close to them currently receiving end-of-life care. Interviews were used in conjunction with hierarchical mapping to explore the network size and composition and influences upon these networks. Interviews were transcribed verbatim. Descriptive statistics were used to analyse the hierarchical maps and this information was combined with a constant comparative analysis of the qualitative data.

Results
On average, close-person networks at the end of life contained eight individuals, three of whom were rated as being ‘closest’. These were typically family members, although in a small number of cases non-family members were included amongst the closest individuals. There was variation in terms of network composition. Qualitative analyses revealed two key influences on network size: death trajectory (those with cognitive problems/diseases towards the end of life had smaller networks) and family size (larger families had larger networks).

Conclusions
The findings of this article have important implications for researchers wishing to include those affected by end-of-life care in an economic evaluation. Focussing on the three closest individuals would be a key starting point for economists seeking to capture spill-overs, whilst a truly societal perspective would require looking beyond proximal family members. This article further discusses the implications of including close persons in economic evaluations for decision makers.

Item Type: Journal Article
Subjects: R Medicine > R Medicine (General)
R Medicine > RA Public aspects of medicine
R Medicine > RT Nursing
Divisions: Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Clinical Trials Unit
Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences
Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH): Terminal care , Terminal care -- Finance , Terminal care -- Economic aspects, Medical care -- Cost effectiveness, Medical care, Cost of -- Evaluation
Journal or Publication Title: PharmacoEconomics
Publisher: Adis International Ltd.
ISSN: 1170-7690
Official Date: 1 April 2019
Dates:
DateEvent
1 April 2019Published
15 March 2018Available
2 August 2018Accepted
Volume: 37
Page Range: pp. 573-583
DOI: 10.1007/s40273-019-00786-5
Status: Peer Reviewed
Publication Status: Published
Reuse Statement (publisher, data, author rights): This is a post-peer-review, pre-copyedit version of an article published in PharmacoEconomics. The final authenticated version is available online at:https://doi.org/10.1007/s40273-019-00786-5
Access rights to Published version: Restricted or Subscription Access
Date of first compliant deposit: 6 August 2018
Date of first compliant Open Access: 15 March 2020
RIOXX Funder/Project Grant:
Project/Grant IDRIOXX Funder NameFunder ID
261098 EconEndLifeH2020 European Research Councilhttp://dx.doi.org/10.13039/100010663
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