School of Population and Public Health, University of British Columbia, 2206 East Mall, Vancouver, British Columbia, V6T 1Z3, Canada. Electronic address: https://twitter.com/@kjmeetswrld.
W. Maurice Young Centre for Applied Ethics, School of Population and Public Health, Provost's Office, University of British Columbia, Vancouver and Kelowna, British Columbia, Canada.
J Cancer Policy. 2021 Dec;30:100303. doi: 10.1016/j.jcpo.2021.100303. Epub 2021 Sep 2.
Several chimeric antigen receptor (CAR-T) T-cell therapies have been approved for use for haematological malignancies. Despite known safety, access, and cost issues, little is known about how patients and caregivers understand novel treatments such as CAR-T and their associated uncertainties.
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.
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.
已有几种嵌合抗原受体（CAR-T）T 细胞疗法被批准用于血液系统恶性肿瘤。尽管已知存在安全性、可及性和成本问题，但对于患者和护理人员如何理解 CAR-T 等新型治疗方法及其相关不确定性知之甚少。
我们从在线公共社交媒体网站 Reddit 上收集数据。我们在三个相关的子版块 r/cancer、r/lymphoma 和 r/leukemia 中进行了关键字搜索。我们系统地提取了帖子和相关评论，并根据我们的纳入标准进行了审查。
我们共确定了 186 篇帖子，其中 87 篇于 2013 年 3 月 1 日至 2021 年 4 月 15 日被纳入定性分析。我们使用定性内容分析来确定主题。被排除的帖子中，88 篇包含了对其他免疫疗法的讨论，11 篇是科学简介。我们确定了四个主题：1）在社区中应对不确定性，2）寻找治愈方法，3）管理与治疗相关的不确定性，4）克服获取相关的不确定性。我们发现患者在寻求新型治疗方法（如 CAR-T 疗法）时面临许多障碍。
患者及其家属的看法和挣扎与制定对患者体验敏感的技术评估以及制定公平资源分配政策有关。
我们的研究强调了在患者和医生之间进行平衡决策的重要性，以确保患者了解癌症治疗的风险和益处。研究人员可能会根据患者的人口统计学特征评估试验参与者，以确保在互联网接入较少的环境中为个人提供公平参与研究的机会。
