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A think-aloud study of the feasibility of patients with end-stage organ failure completing the ICECAP-SCM
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Nwankwo, Henry, Coast , Joanna, Hewison, Alistair, Kinghorn, Philip, Madathil, Shyam and Bailey, Cara (2022) A think-aloud study of the feasibility of patients with end-stage organ failure completing the ICECAP-SCM. Palliative Medicine . doi:10.1177/02692163221122979 ISSN 0269-2163. (In Press)
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WRAP-A-think-aloud-study-of-the-feasibility-of-patients-with-end-stage-organ-failure-completing-the-ICECAP-SCM-Nwankwo-2022.pdf - Published Version - Requires a PDF viewer. Available under License Creative Commons Attribution 4.0. Download (279Kb) | Preview |
Official URL: https://doi.org/10.1177/02692163221122979
Abstract
Background: The ICECAP-Supportive Care Measure (SCM) is a self-complete measure developed to inform economic decision making at the end-of-life. Previous research has demonstrated its feasibility in hospice and nursing home settings. This is the first study of its use with patients on the organ failure trajectory.
Aim: To determine the feasibility of using the ICECAP-SCM with patients experiencing end-stage organ failure in a hospital setting.
Design: Participants were asked to ‘think aloud’ when completing the ICECAP-SCM, ICECAP-A and EQ-5D-5L measures. The interviews were transcribed verbatim and examined for errors in comprehension, retrieval, judgment, and response by five raters. Qualitative data were collected to explore reasons for errors in completing the measures and participants’ views about the measures.
Setting/participants: Sixty patients (with end-stage renal failure n=18; end-stage heart failure n=21; end-stage chronic obstructive pulmonary disease n=21) participated. Senior clinicians applied prognostic criteria to determine eligibility.
Results: Participants reported that the measures were acceptable, clear, and easy to complete. Error rates in completing the measures were low (ICECAP-A = 3%, ICECAP-SCM = 5.7% and EQ-5D-5L = 6.3%). There was some variation in responses between patients with different end-stage conditions, particularly those with symptom fluctuation. Some patients had not considered their end-of-life (i.e. advance care planning) and reported finding questions about this difficult to answer.
Conclusion: It is feasible to use the ICECAP-SCM with patients with end-stage organ failure receiving care in hospital settings. This study provides evidence for researchers and policy makers involved in measuring end-of-life care globally. The ICECAP-SCM can be recommended for research with patients in end-stage organ failure to appropriately capture the broader benefits of end-of-life care.
| Item Type: | Journal Article | |||||||||
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| Subjects: | R Medicine > R Medicine (General) R Medicine > RA Public aspects of medicine R Medicine > RB Pathology |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Clinical Trials Unit Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Palliative treatment, Hospices (Terminal care), Quality of life, Terminal care -- Economic aspects, Multiple organ failure | |||||||||
| Journal or Publication Title: | Palliative Medicine | |||||||||
| Publisher: | Sage | |||||||||
| ISSN: | 0269-2163 | |||||||||
| Official Date: | 2022 | |||||||||
| Dates: |
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| DOI: | 10.1177/02692163221122979 | |||||||||
| Status: | Peer Reviewed | |||||||||
| Publication Status: | In Press | |||||||||
| Access rights to Published version: | Open Access (Creative Commons) | |||||||||
| Date of first compliant deposit: | 17 August 2022 | |||||||||
| Date of first compliant Open Access: | 19 August 2022 | |||||||||
| RIOXX Funder/Project Grant: |
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