接受 CAR-T 细胞治疗者的体验与观点：对在线 Reddit 讨论的定性分析

We gathered data from Reddit, an online public social media site. We performed a keyword search in three relevant subreddit threads: r/cancer, r/lymphoma, r/leukemia. We systematically extracted threads and associated comments and reviewed against our inclusion criteria.

We identified a total of 186 posts and 87 were included in the qualitative analysis from March 1, 2013, to April 15, 2021. Qualitative content analysis was used to identify themes. Of those excluded, 88 contained discussions of other immunotherapies and 11 were scientific profiles. We identified four themes: 1) navigating uncertainty with community, 2) finding a cure, 3) managing treatment-related uncertainties, and 4) overcoming uncertainties related to access. We found patients experience numerous barriers when seeking access to novel therapeutics, such as CAR-T therapies.

The perceptions and struggles of patients and their families are relevant for developing technology assessments that are sensitive to patient experiences, as well as to inform policies for equitable resource allocation. POLICY SUMMARY: Our study underscores the importance of balanced decision making between patients and physicians to ensure patients understand the risk and benefits of cancer treatments. Study investigators might evaluate trial participants based on patient demographics to ensure equitable access to studies for individuals in settings where internet access is less common.