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

Abstract

ContextResearch 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. ObjectivesTo assess the response burden due to questionnaires about the end of life in cancer patients and to explore associations with individual variables. MethodsIn 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. ResultsA 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. ConclusionThe 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.