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

Area of Science:

• Oncology
• Immunotherapy
• Patient Education

Background:

• A significant knowledge-expectation gap exists regarding immune checkpoint inhibitors (ICIs).
• Limited research compares patient understanding in outpatient clinics versus clinical trials.

Purpose of the Study:

• To compare knowledge, expectations, and decision-making preferences of patients receiving ICIs in outpatient clinics versus clinical trials.
• To identify discrepancies between perceived and actual understanding of ICIs.

Main Methods:

• A cross-sectional study involving 124 patients with solid tumors treated with ICIs.
• Utilized a structured questionnaire to assess ICI knowledge, side effect awareness, treatment expectations, and decision-making preferences.
• Compared data between outpatient clinic (OC) and clinical trial (CT) participants.

Main Results:

• Oncologists were the primary information source for both groups.
• CT patients felt more informed (62.5% vs. 34.2%) but objective knowledge was poor in both.
• CT patients reported higher treatment expectations (91.7% vs. 64.5%) and satisfaction (75% vs. 46.1%).
• Most patients preferred physician-led decisions on discontinuing ICI therapy.

Conclusions:

• Patients often lack accurate knowledge about ICIs, even when feeling informed.
• Clinical trial participation may increase patient optimism and satisfaction, but not necessarily comprehension.
• Targeted patient education is crucial to bridge the knowledge-expectation gap and facilitate shared decision-making.