A think-aloud study of the feasibility of patients with end-stage organ failure completing the ICECAP-SCM

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, judgement, 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%,and 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.

Methodological challenges and potential solutions for economic evaluations of palliative and end-of-life care: A systematic review

“…In total, we identified challenges that can be grouped into nine themes, with most of the studies relating to three of them: ambiguity in the selection of outcomes, 16,17,20 –22,26,34 –50,62,63,72,74–88 , non-standardised measurement and valuation of costs, 15,17,26,40 –42,47,51 –57,61,64,65,73,85,89 –93 and narrow costing perspective app-lied. 17,20,…”

“…The largest group of first authors (41%) was affiliated with institutions in the UK, 15,16,20,22,26,34 –61 followed by the USA (13%). 62 –71 Study types and their focus varied widely, including systematic reviews and meta-analyses, 17,26,41,52 –54,72,73 qualitative studies 35,36,40,44,49,50,51,58,74 and studies describing, for example, the development and/or concept of an outcome measure, testing its validity. The overall quality of the studies included was high and none was excluded based on low quality appraisal scores.…”

“…35 Aligning with the capability approach, these measures concentrate on domains related to achieving a good life and good death for patients and their relatives. 35,45,50 Although several psychometric validation studies on the ICECAP-SCM have been recently published, 36,48,49,75 more comparative research is needed in this area. 45,50 Another measure is the Palliative Care Yardstick, which aims to assign a higher value to end-of-life care 22 and address dimensions such as caregiver impact 47 and valuation problems.…”

“…While the discussions regarding the most suitable outcome measurement instrument are ongoing, there has been a noticeable increase in psychometric validation studies focusing on specific tools like the ICECAP-SCM. 48,49,118,119 This growing body of research provides valuable information about the suitability and validity of such tools. Both in terms of challenges and potential solutions, the list of recommendations is not exhaustive.…”

“…In total, we identified challenges that can be grouped into nine themes, with most of the studies relating to three of them: ambiguity in the selection of outcomes, 16,17,[20][21][22]26,[34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49][50]62,63,72,[74][75][76][77][78][79][80][81][82][83][84][85][86][87][88] , non-standardised measurement and valuation of costs, 15,17,26,[40][41][42]47,[51][52][53]…”