Development of a measure (ICECAP-Close Person Measure) through qualitative methods to capture the benefits of end-of-life care to those close to the dying for use in economic evaluation

Abstract

Background: End-of-life care affects both the patient and those close to them. Typically, those close to the patient are not considered within economic evaluation, which may lead to the omission of important benefits resulting from end-of-life care. Aim: To develop an outcome measure suitable for use in economic evaluation that captures the benefits of end-of-life care to those close to the dying. Design: To develop the descriptive system for the outcome measure, in-depth qualitative interviews were conducted with the participants and constant comparative analysis methods were used to develop a descriptive system for the measure. Participants: Twenty-seven individuals bereaved within the last 2 years or with a close-person currently receiving end-of-life care were purposively recruited into the study. Participants were recruited through newsletters, adverts, snowball sampling and a local hospice. Results: Twenty-seven individuals were recruited. A measure of capability with six attributes, each with five levels, was developed based on themes arising from the analysis. Attributes comprise the following: good communication with services, privacy and space to be with the loved one, emotional support, practical support, being able to prepare and cope and being free from emotional distress related to the condition of the decedent. Conclusion: This measure is designed to capture the benefits of end-of-life care to close-persons for use in economic evaluation. Further research should value the measure and develop methods for incorporating outcomes for close-persons into economic evaluation.

Do capability and functioning differ? A study of U.K. survey responses

“…Nevertheless, interest has grown in health economics in developing measures to capture people's self-reported capabilities. These self-report measures have focused on capabilities relevant to older people , women (Greco, Skordis-Worrall, Mkandawire, & Mills, 2015), and the general adult population (Al-Janabi, Flynn, & Coast, 2012), and on measures of capability for evaluating interventions in public health (Lorgelly, Lorimer, Fenwick, Briggs, & Anand, 2015), social care (Burge, Netten, & Gallo, 2010), mental health (Simon et al, 2013), pain (Kinghorn, Robinson, & Smith, 2015), and end-of-life care (Canaway, Al-Janabi, Kinghorn, Bailey, & Coast, 2017;Sutton & Coast, 2014). Arguably, the most well-developed capability measures in terms of their testing and application in the health sector are the ICECAP capability measures (see www.icecap.bham.ac.uk).…”

Appropriate frameworks for economic evaluation of end of life care: A qualitative investigation with stakeholders

“…The diversity of views about the conduct of economic evaluation of end of life care and the clear need for further research for almost all frameworks, suggests that a major implication arising from this work is that more research resource is required to generate a greater evidence base in this area. One factor that was identified as important was the need to assess the impact of care on those close to the person at end of life and work has recently been undertaken to explore this issue (32).…”

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

“…Within the health economics literature, there have been arguments for including the impacts of people other than the patient within economic evaluation [7][8][9][10][11][12][13], particularly when the impact on people other than the patient is significant. Elsewhere, wider impacts extending beyond the patient as a single (and isolated) individual have been described as being 'too important to ignore' [8]; a range of measures exist to try to capture spill-over impacts [7,9,14].…”