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Close-Person Spill-Overs in End-of-Life Care: Using Hierarchical Mapping to Identify Whose Outcomes to Include in Economic Evaluations

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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.

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Author information

Authors and Affiliations

  1. Warwick Clinical Trials Unit, Warwick Medical School, University of Warwick, Coventry, UK

    Alastair Canaway

  2. Health Economics Unit, University of Birmingham, Birmingham, UK

    Hareth Al-Janabi, Philip Kinghorn & Cara Bailey

  3. School of Social and Community Medicine, University of Bristol, Bristol, UK

    Joanna Coast

Authors
  1. Alastair Canaway
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  2. Hareth Al-Janabi
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  3. Philip Kinghorn
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  4. Cara Bailey
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  5. Joanna Coast
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Corresponding author

Correspondence to Alastair Canaway.

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Funding

This work was supported by the European Research Council (Grant No. 261098 EconEndLife).

Conflict of Interest

Alastair Canaway, Hareth Al-Janabi, Philip Kinghorn, Cara Bailey and Joanna Coast have no conflicts of interest that are directly relevant to the content of this article.

Data Availability

The individual-level data generated during and/or analysed during this study are not publicly available owing to a lack of consent for use in this manner. Aggregated data are available from the corresponding author on reasonable request.

Author Contributions

AC was responsible for conducting the research and for the drafting of the manuscript. All authors were involved in the development and design of the study. All authors contributed to the analysis of the data. All authors reviewed, commented and edited drafts of the manuscript.

Appendices

Appendix 1 Example of advert

1.1 Volunteers Required for Study on the End of Life and Bereavement

Have you been bereaved in the last 6–24 months and would feel comfortable discussing your experience with a researcher? Alternatively, is somebody close to you currently receiving end-of-life care? If so, then we would like to invite you to participate in our study investigating how the end of life impacts family and friends.

The study aims to improve the evaluation of end-of-life care in the UK. Confidentiality and sensitivity will be guaranteed. You will be sent additional information and be able to discuss the study with the researcher before being asked to decide whether or not to participate. For more information, email Alastair Canaway at axc105@bham.ac.uk

Appendix 2 Hierarchical mapping template

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Canaway, A., Al-Janabi, H., Kinghorn, P. et al. Close-Person Spill-Overs in End-of-Life Care: Using Hierarchical Mapping to Identify Whose Outcomes to Include in Economic Evaluations. PharmacoEconomics 37, 573–583 (2019). https://doi.org/10.1007/s40273-019-00786-5

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