"The ICECAP-SCM tells you more about what I'm going through": A think aloud study measuring quality of life amongst patients receiving supportive and palliative care

Background: The ICECAP Supportive Care Measure (ICECAP-SCM) is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions.

Aim: To determine the feasibility of completing ICECAP-SCM alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) amongst patients receiving hospice care, close persons and healthcare professionals.

Design: Participants were asked to ‘think-aloud’ whilst completing ICECAP-SCM and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison.

Setting/participants: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. 72 semistructured interviews were conducted with patients (n=33), close persons (n=22) and healthcare professionals (n=17).

Results: Patients and close persons reported that the ICECAP-SCM was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% amongst patients, 4.5% amongst close persons) compared to EQ-5D-5L (9.7% amongst patients, 5.5% amongst close persons). Healthcare professionals acknowledged the value of the ICECAP-SCM but had fewer errors in completing the EQ-5D-5L(3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states.

Conclusions: The ICECAP-SCM is feasible to use and perceived as appropriate for
evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.