Patients with pre-existing autoimmune disorders and cancer considering immune checkpoint inhibitors (ICIs) need to receive balanced information about the benefits and risk of developing immune-related adverse events (irAEs) and flare-ups of their autoimmune disease. To assess the learning needs of patients with cancer and pre-existing autoimmune disease regarding ICI treatment, we interviewed 29 patients with autoimmune disease and cancer from a comprehensive cancer center, of whom 20 had received ICI and 9 were candidates to receive ICI at a US Cancer Center. In-depth semi-structured interviews were conducted from August 2021 and January 2022. Interviewee’s opinions and preferences about content and information delivery methods were collected. We recorded and transcribed interviews and analyzed them using thematic analysis. Half of the participants were female, and their median (SD) age was 62.9 (±10.9) years. The identified health information needs included the following: (1) information on irAEs and autoimmune disease flare-ups; (2) benefits of ICI; (3) ICI mechanism in the context of autoimmune disease; (4) management of flare-ups; (5) reasons for stopping or modifying cancer or autoimmune disease treatment; (6) likelihood of autoimmune disease progression or organ damage; and (7) lifestyle changes that could help avoid irAEs. Patients who had received ICI and those who had not yet received treatment reported similar needs, although patients who had received ICI had more questions about cancer treatment modifications. Patients also expressed the need to better understand when to contact their provider and how to share information with multiple providers. Most patients wanted to receive information in visual formats for review at home and at their own pace. Patients expressed interest in having educational tools to facilitate shared decision-making with their physicians, and they identified several areas of health information concerning therapy with ICI. They also highlighted the importance of communication among their various providers.
考虑使用免疫检查点抑制剂（ICIs）治疗的已存在自身免疫性疾病和癌症患者，需要获得关于治疗获益与发生免疫相关不良事件（irAEs）及自身免疫性疾病复发风险的平衡信息。为评估癌症合并自身免疫性疾病患者对ICI治疗的学习需求，我们对来自一家综合癌症中心的29名自身免疫性疾病合并癌症患者进行了访谈，其中20人已接受ICI治疗，9人计划在美国一家癌症中心接受ICI治疗。深度半结构化访谈于2021年8月至2022年1月期间进行。收集了受访者关于教育内容及信息传递方式的意见和偏好。我们记录并转录访谈内容，采用主题分析法进行分析。半数参与者为女性，平均年龄（标准差）为62.9（±10.9）岁。识别出的健康信息需求包括：（1）irAEs与自身免疫性疾病复发的信息；（2）ICI治疗的获益；（3）自身免疫性疾病背景下ICI的作用机制；（4）疾病复发的管理；（5）停止或调整癌症或自身免疫性疾病治疗的原因；（6）自身免疫性疾病进展或器官损伤的可能性；（7）有助于避免irAEs的生活方式改变。已接受和未接受ICI治疗的患者报告的需求相似，但已接受治疗的患者对癌症治疗调整有更多疑问。患者还表示需要更好地了解何时联系医疗提供者以及如何与多位提供者共享信息。大多数患者希望以可视化形式获取信息，以便在家按自己的节奏查阅。患者对使用教育工具促进与医生的共同决策表现出兴趣，并明确了ICI治疗相关的多个健康信息领域。他们还强调了不同医疗提供者之间沟通的重要性。
肿瘤(癌症)患者之家