Immunotherapy expectations and knowledge in practice and clinical trials: a cross-sectional study

There often exist a gap between patient knowledge and expectations about immune checkpoint inhibitors (ICIs). Few studies have directly compared outpatient clinic (OC) patients and clinical trial (CT) participants in this context.

This single-center, cross-sectional study included 124 patients with solid tumors treated with ICIs at Ankara University between July 2024 and February 2025 (76 OC; 48 CT). A structured questionnaire evaluated patients' understanding of ICI mechanisms and side effects, along with their treatment expectations and decision-making preferences.

Oncologists were the main source of information for both groups. Although more CT patients reported feeling adequately informed (62.5% vs. 34.2%, p = 0.003), both groups performed similarly poorly on objective knowledge questions. CT patients had significantly higher treatment expectations (91.7% vs. 64.5%, p = 0.001) and greater satisfaction with treatment outcomes (75% vs. 46.1%, p = 0.002). Expectations regarding side effects were comparable. Most patients, regardless of setting, preferred that physicians make decisions about discontinuing ICI therapy.

Despite feeling informed, patients often lack accurate knowledge about ICIs. CT participation appears to enhance optimism and satisfaction but not necessarily understanding. These findings emphasize the importance of targeted education to bridge the knowledge-expectation gap and support shared decision-making.