Between hope and reality: How oncology physicians and information providers of a cancer information service manage patients' expectations for and experiences with immunotherapies.

OBJECTIVES: Immune checkpoint inhibitors have established themselves as a further therapeutic pillar in the treatment of various types of cancer. This can create challenges and possible misunderstandings for patients. The aim of this study was to assess the experiences of physicians and information providers in their interactions with patients about immunotherapy. METHODS: The study design was exploratory with qualitative research methodology. We performed focus groups with 8 oncology physicians and 9 information providers of a cancer information service. RESULTS: In the coding process, five focal points could be identified: (1) image of immunotherapy, (2) presentation of immunotherapy in the media, (3) hope, (4) creation of an information base, and (5) lessons learned and future directions. Physicians and information providers report that immunotherapy has a very positive image among patients. This seems to be due to the presentation of immunotherapy in the media and the positive associations of people with terms such as the immune system and the body's own defense. CONCLUSIONS: In contrast to chemotherapy, patients are at risk of underestimating the early symptoms of serious side effects of immunotherapy. From the point of view of physicians, the exaggerated expectations of patients regarding the possibilities of immunotherapy are often not met. The challenge for practitioners is to consider patients' expectations to provide balanced information and recommendations. PRACTICAL IMPLICATIONS: Communication skills training and up-to-date information tools should improve physician-patient communication.

Patient expectations are better for immunotherapy than traditional chemotherapy for cancer.

PURPOSE: The main aim of the study was to explore the expectations and knowledge of advanced-stage cancer patients about immunotherapy. METHODS: This mixed methods study included 53 cancer patients on immune checkpoint inhibitors (ICIs), 55 cancer patients undergoing chemotherapy (CT), and 53 non-cancer patients. Participants' expectations about ICIs and CT were compared. Additional qualitative data were derived from semi-structured interviews. RESULTS: Among patients who did not receive ICIs, 63 (58%) had never heard of ICIs and 94 (87%) had large gaps in their knowledge of ICIs. Among ICI patients, 33 (62%) simply described ICIs without errors. ICI perception was positive, regardless of whether respondents received or had heard of ICIs, which became particularly evident when compared to CT. ICIs were rated as more promising, and all adverse effects were expected to be significantly lower than those of CT. Knowledge about ICIs was also limited in the interviewed ICI patients. Some patients reported adverse effects of ICIs that were mostly mild and well-tolerated or easily treated. CONCLUSIONS: The lack of understanding of ICIs should be improved by activities to increase the knowledge of ICI patients and the general population. In contrast to CT, ICIs invoked fewer negative associations with efficacy and toxicity. Therefore, attention should be paid to risk awareness when educating patients. (Clinical trial registration number: DRKS00011868) Trial Registration: German clinical trials register, www.germanctr.de , number DRKS00011868.