Trading-Off Quality of Life and Survival Time – Feasibility of Web-Based Discrete Choice Experiments For QLU-C10D Utility Elicitation in Cancer Patients

In the context of the EORTC Quality of Life Group utility project, general population valuations for the recently developed cancer-specific utility instrument EORTC QLU-C10D are currently being performed by means of discrete choice experiments (DCEs). In addition, the elicitation of cancer patients’ utilities is planned. A pilot-study was conducted to investigate the feasibility and appropriateness of the DCEs for QLU-C10D utility elicitation in cancer patients. We aimed at 40 “think-aloud” cognitive interviews on feasibility and appropriateness in a heterogeneous sample of cancer patients (exclusion criteria: cognitive impairments, age <18 and >85, expected survival time <6 months). Exactly the same survey material and design as in general population valuations were used, i.e. web-based presentation, 16 binary choice sets per respondent, hypothetical health states including 10 quality of life attributes and a survival time (1, 2, 5, 10 years). Number and reasons for non-participation were recorded. 120 patients were approached and 42 interviews could be completed (43% female, mean age 59.3+-13.5 years, diagnoses: thyroid, breast, lung, pancreatic, haematological, and gastrointestinal cancers; stages: UICC 1 to 4; active treatment 64%, chemotherapy 48%, radiation therapy 45%, surgery only: 7%). Reasons for non-participation were largely organisational and required time resources. Most patients appreciated being asked about their perspective on quality of life and survival time and in principle would be willing to do the DCEs web-based. The trading-off was perceived very burdensome by 11% through evoking thoughts about their own death. Other points of criticism raised by more than 10% of patients were: too many choice sets; explanation was insufficient. For 26% of patients no changes were necessary. Apparently web-based DCEs for the valuation of the QLU-C10D are feasible for cancer patients. Survey adaptations to cancer patients’ needs need to be discussed carefully against the background of comparability with general population utilities.