Background: Immune checkpoint inhibitors (ICIs) are increasingly used to treat several types of tumors. Impact of this emerging therapy on patients’ health-related quality of life (HRQoL) is usually collected in clinical trials through standard questionnaires. However, this might not fully reflect HRQoL of patients under real-world conditions. In parallel, users’ narratives from social media represent a potential new source of research concerning HRQoL. Objective: The aim of this study is to assess and compare coverage of ICI-treated patients’ HRQoL domains and subdomains in standard questionnaires from clinical trials and in real-world setting from social media posts. Methods: A retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experiences with ICIs between January 2011 and August 2018. Automatic and manual extractions were implemented to create a corpus where domains and subdomains of HRQoL were classified. These annotations were compared with domains covered by 2 standard HRQoL questionnaires, the EORTC QLQ-C30 and the FACT-G. Results: We identified 150 users who described their own experience with ICI (89/150, 59.3%) or that of their relative (61/150, 40.7%), with 137 users (91.3%) reporting at least one HRQoL domain in their social media posts. A total of 8 domains and 42 subdomains of HRQoL were identified: Global health (1 subdomain; 115 patients), Symptoms (13; 76), Emotional state (10; 49), Role (7; 22), Physical activity (4; 13), Professional situation (3; 9), Cognitive state (2; 2), and Social state (2; 2). The QLQ-C30 showed a wider global coverage of social media HRQoL subdomains than the FACT-G, 45% (19/42) and 29% (12/42), respectively. For both QLQ-C30 and FACT-G questionnaires, coverage rates were particularly suboptimal for Symptoms (68/123, 55.3% and 72/123, 58.5%, respectively), Emotional state (7/49, 14% and 24/49, 49%, respectively), and Role (17/22, 77% and 15/22, 68%, respectively). Conclusions: Many patients with cancer are using social media to share their experiences with immunotherapy. Collecting and analyzing their spontaneous narratives are helpful to capture and understand their HRQoL in real-world setting. New measures of HRQoL are needed to provide more in-depth evaluation of Symptoms, Emotional state, and Role among patients with cancer treated with immunotherapy.

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中文翻译：

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探索用免疫检查点抑制剂治疗的患者的健康相关生活质量：社交媒体研究。

背景：免疫检查点抑制剂（ICI）越来越多地用于治疗几种类型的肿瘤。这种新兴疗法对患者健康相关生活质量（HRQoL）的影响通常在临床试验中通过标准调查表收集。但是，这可能无法完全反映现实情况下患者的HRQoL。同时，来自社交媒体的用户叙述代表了有关HRQoL的潜在新研究来源。目的：本研究的目的是评估和比较ICI治疗患者的HRQoL域和子域在临床试验的标准问卷中以及在社交媒体帖子中的真实环境中的覆盖率。方法：进行了一项回顾性研究，收集了互联网用户用法语撰写的社交媒体帖子，这些帖子提到了他们在2011年1月至2018年8月之间的ICI经历。实施了自动和手动提取以创建对HRQoL的域和子域进行分类的语料库。将这些注释与2个标准HRQoL问卷（EORTC QLQ-C30和FACT-G）所涵盖的领域进行了比较。结果：我们确定了150位描述自己的ICI体验的用户（89/150，占59.3％）或亲戚（61 / 150，40.7％）的体验，其中137位用户（91.3％）报告了他们在ICI中的至少一个HRQoL域社交媒体帖子。总共确定了HRQoL的8个域和42个子域：整体健康（1个子域； 115位患者），症状（13； 76），情绪状态（10； 49），作用（7； 22），身体活动（4； 5）。 13），职业状况（3; 9），认知状态（2; 2）和社会状态（2; 2）。与FACT-G相比，QLQ-C30在社交媒体HRQoL子域的全球覆盖范围更广，分别为45％（19/42）和29％（12/42）。对于QLQ-C30和FACT-G问卷，症状（分别为68 / 123、55.3％和72 / 123、58.5％），情绪状态（7 / 49、14％和24/49，分别为49％）和角色（分别为17 / 22、77％和15 / 22、68％）。结论：许多癌症患者正在使用社交媒体分享他们的免疫疗法经验。收集和分析其自发叙述有助于在现实世界中捕获和理解其HRQoL。需要新的HRQoL指标，以便对症状，情绪状态，

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