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

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: 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.