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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

Research output: Contribution to journalArticle

Original languageEnglish
Pages (from-to)573–583
Number of pages11
JournalPharmacoEconomics
Volume37
Issue number4
Early online date15 Mar 2019
DOIs
DateAccepted/In press - 2 Aug 2018
DateE-pub ahead of print - 15 Mar 2019
DatePublished (current) - Apr 2019

Abstract

Background: Guidelines for economic evaluation 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 evaluation. The purpose of this paper is to examine (i) how many people are close to those at end of life (ii) their characteristics and (iii) what influences network size at 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, 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 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 end of life had smaller networks) and family size (larger families had larger networks).

Conclusion: The findings of this paper have important implications for researchers wishing to include those affected by end of life care in 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 paper further discusses the implications of including close-persons in economic evaluation for decision makers.

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  • Full-text PDF (accepted author manuscript)

    Rights statement: This is the author accepted manuscript (AAM). The final published version (version of record) is available online via Springer at https://link.springer.com/article/10.1007%2Fs40273-019-00786-5 . Please refer to any applicable terms of use of the publisher.

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