Electronic real-time assessment of patient-reported outcomes in routine care—first findings and experiences from the implementation in a comprehensive cancer center

Purpose Cancer patients suffer from a variety of physical and mental complaints. Since physician assessment of symptoms seems insufficient to reveal the complete range of patients’ ailments, patient-reported outcomes (PRO) have become of key importance in modern cancer treatment. The implementation and first results of a systematic electronic real-time assessment of PRO in routine care is described. Methods Consecutive patients presenting for the first time to a German comprehensive cancer center were asked to fill in an adaptive self-administered electronic questionnaire consisting of standardized PRO measures. After completion, patient-reported data was linked to the patients’ medical files for discussion in the first consultation with the treating physician. Interviews with staff were conducted to identify barriers in implementation. Results Out of 160 cancer patients, 126 (79 %; mean age 63 years, 67 % males) agreed to participate. The number of recruited patients increased over time. Of participating patients, 67 % provided complete information on all PRO-related scales. On average, 31 min (range 3–140) were required to fill in the questionnaire. Of participating patients, 53.0 % comprised need for psychooncological support and 62 % revealed moderate to severe psychosocial distress. The mean score for global quality of life according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) was 55.2 (SD ±25.6). Conclusions Comprehensive oncological treatment needs to consider disease symptoms, quality of life, preferences, and comorbidities of individual patients in a structured, standardized, and transparent way. Our findings indicate that an adaptive, self-administered electronic assessment tool for cancer patients to report a broad set of PRO can be feasibly implemented and is well accepted by patients in a realistic setting.