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Hospice patients’ participation in choice experiments to value supportive care outcomes
  1. Cara Bailey1,
  2. Philip Kinghorn2,
  3. Alistair Hewison1,
  4. Christina Radcliffe3,
  5. Terry Nicholas Flynn4,
  6. Elizabeth Huynh5 and
  7. Joanna Coast6
  1. 1 School of Nursing, Institute of Clinical Sciences, University of Birmingham, Birmingham, UK
  2. 2 Health Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK
  3. 3 Birmingham St Mary’s Hospice, Birmingham, UK
  4. 4 TF Choices Ltd, Nottingham, UK
  5. 5 Institute for Choice, University of South Australia Business School, Adelaide, South Australia, Australia
  6. 6 Bristol Medical School, University of Bristol, Bristol, UK
  1. Correspondence to Dr Cara Bailey, School of Nursing, Institute of Clinical Sciences, University of Birmingham, Birmingham B15 2TT, UK; c.bailey.2{at}bham.ac.uk

Abstract

Background Values used in economic evaluation are typically obtained from the general public, which is problematic when measures are to be used with people experiencing a life-course stage such as the end of life.

Objective To assess the feasibility of obtaining values for the ICECAP-Supportive Care Measure (SCM) from patients receiving advanced supportive care through a hospice.

Methods Participants completed eight best-worst scaling questions in a think-aloud interview to explain choices in different hypothetical end-of-life scenarios. Three independent raters identified errors in completion of the best-worst scaling task, and thematic analysis of associated qualitative data was undertaken to explore task difficulty and choices.

Results Twelve hospice patients were recruited. Most were able to complete the task and prioritise aspects of supportive care with either no difficulty (n=50%) or difficulty in just one of the eight scenarios (n=25%). Two patients (n=17%) were unable to comprehend the hypothetical nature of the task. The qualitative data confirmed there was good engagement with the task and identified the importance the respondents attached to maintaining dignity.

Conclusion The findings suggest that people at the end of life will be able to complete a short, interviewer-administered, best-worst scaling task. To maximise engagement, it is recommended that the task is short and initiated with an example. Scenarios are best presented on show-cards in large print. A full evaluation of the ICECAP-SCM with those at the end of life is feasible.

  • end of life care
  • hospice care
  • methodological research
  • quality of life
  • supportive care

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Footnotes

  • Contributors Conception or design of the work: JC. Data collection: CB, PK, CR. Data analysis and interpretation: CB, JC, PK, AH, EH, TNF. Drafting the article: CB, JC. Critical revision of the article: CB, JC, AH, PK, CR, EH, TNF. Final approval of the version to be published: CB, JC, AH, PK, CR, EH, TNF.

  • Funding This work was supported by European Research Council (grant number: 261098 EconEndLife).

  • Competing interests None declared.

  • Ethics approval This study complies with the Declaration of Helsinki. Ethics committee approval was secured from Wales Research Ethics Committee 5 (Ref: 14/WA/1144). Informed consent was obtained from all participants.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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