Questionnaires About the End of Life for Cancer Patients - Is the Response Burden Acceptable?

CONTEXT: Research about the end of life with the help of patient-reported outcomes in vulnerable populations such as cancer patients is needed but is potentially burdensome and can therefore raise concerns. OBJECTIVES: To assess the response burden due to questionnaires about the end of life in cancer patients and to explore associations with individual variables. METHODS: In a cross-sectional design response burden was assessed using a six-item instrument after completion of a survey that concerned the end of life. Associations with age, gender, type of care (curative/palliative), years since diagnosis, distress, depression, anxiety, death anxiety, readiness for end-of-life conversations, and readiness for advance care planning were explored via correlational analyses and multiple regressions. Burden due to the topic of end-of-life and completing questionnaires in general was compared. RESULTS: A total of 269 cancer patients (mean age 61.4 (SD =12.3); 59.5% male; 58.4% in palliative care) completed the survey in a German hospital. The majority did not report response burden; 29.7% reported at least some burden due to study participation. The multiple regression (F [10,26] = 9.97, p < 0.001) indicated that stable predictors of response burden were higher death anxiety (ß = 0.4), lower readiness to talk about one's end of life (ß = -0.34) and higher age (ß = 0.23). No additional subjective burden due to the topic of end-of-life was reported. CONCLUSION: The reported response burden seems acceptable since it was generally low. However, a subgroup did report some burden. Minimising burden and enhancing participants' benefits without compromising the research quality should further influence study designs in this field.