Social Computing Laboratory, Nara Institute of Science and Technology, Ikoma, Japan.
J Med Internet Res. 2023 Apr 20;25:e45249. doi: 10.2196/45249.
The COVID-19 pandemic disrupted the needs and concerns of the cystic fibrosis community. Patients with cystic fibrosis were particularly vulnerable during the pandemic due to overlapping symptoms in addition to the challenges patients with rare diseases face, such as the need for constant medical aid and limited information regarding their disease or treatments. Even before the pandemic, patients vocalized these concerns on social media platforms like Reddit and formed communities and networks to share insight and information. This data can be used as a quick and efficient source of information about the experiences and concerns of patients with cystic fibrosis in contrast to traditional survey- or clinical-based methods.
This study applies topic modeling and time series analysis to identify the disruption caused by the COVID-19 pandemic and its impact on the cystic fibrosis community's experiences and concerns. This study illustrates the utility of social media data in gaining insight into the experiences and concerns of patients with rare diseases.
We collected comments from the subreddit r/CysticFibrosis to represent the experiences and concerns of the cystic fibrosis community. The comments were preprocessed before being used to train the BERTopic model to assign each comment to a topic. The number of comments and active users for each data set was aggregated monthly per topic and then fitted with an autoregressive integrated moving average (ARIMA) model to study the trends in activity. To verify the disruption in trends during the COVID-19 pandemic, we assigned a dummy variable in the model where a value of "1" was assigned to months in 2020 and "0" otherwise and tested for its statistical significance.
A total of 120,738 comments from 5827 users were collected from March 24, 2011, until August 31, 2022. We found 22 topics representing the cystic fibrosis community's experiences and concerns. Our time series analysis showed that for 9 topics, the COVID-19 pandemic was a statistically significant event that disrupted the trends in user activity. Of the 9 topics, only 1 showed significantly increased activity during this period, while the other 8 showed decreased activity. This mixture of increased and decreased activity for these topics indicates a shift in attention or focus on discussion topics during this period.
There was a disruption in the experiences and concerns the cystic fibrosis community faced during the COVID-19 pandemic. By studying social media data, we were able to quickly and efficiently study the impact on the lived experiences and daily struggles of patients with cystic fibrosis. This study shows how social media data can be used as an alternative source of information to gain insight into the needs of patients with rare diseases and how external factors disrupt them.
COVID-19 大流行扰乱了囊性纤维化社区的需求和关注点。由于重叠的症状，囊性纤维化患者在大流行期间尤其脆弱，此外，他们还面临着与罕见病患者相同的挑战，例如需要持续的医疗援助以及关于疾病或治疗的信息有限。甚至在大流行之前，患者就在 Reddit 等社交媒体平台上表达了这些担忧，并组建了社区和网络，以分享见解和信息。与传统的基于调查或临床的方法相比，这些数据可以作为了解囊性纤维化患者经历和关注点的快速高效信息来源。
本研究应用主题建模和时间序列分析来识别 COVID-19 大流行造成的干扰及其对囊性纤维化社区经历和关注点的影响。本研究说明了社交媒体数据在深入了解罕见病患者经历和关注点方面的效用。
我们从 r/CysticFibrosis 子版块中收集了评论，以代表囊性纤维化社区的经历和关注点。在将评论用于训练 BERTopic 模型以将每条评论分配到一个主题之前，对评论进行了预处理。根据主题每月汇总每个数据集的评论数量和活跃用户数量，然后使用自回归综合移动平均 (ARIMA) 模型拟合趋势，以研究活动趋势。为了验证 COVID-19 大流行期间趋势的中断，我们在模型中分配了一个虚拟变量，其中 2020 年的月份赋值为“1”，否则赋值为“0”，并测试其统计学意义。
从 2011 年 3 月 24 日至 2022 年 8 月 31 日，我们共收集了来自 5827 位用户的 120738 条评论。我们发现了 22 个主题，代表了囊性纤维化社区的经历和关注点。我们的时间序列分析表明，对于 9 个主题，COVID-19 大流行是一个具有统计学意义的事件，扰乱了用户活动趋势。在这 9 个主题中，只有 1 个主题的活动显著增加，而其他 8 个主题的活动则减少。这些主题的活动增加和减少的混合表明，在此期间，人们对讨论主题的关注或重点发生了转移。
COVID-19 大流行期间，囊性纤维化社区面临的经历和关注点发生了中断。通过研究社交媒体数据，我们能够快速有效地研究这对囊性纤维化患者的生活经历和日常挣扎的影响。这项研究表明，社交媒体数据如何可以作为获得罕见病患者需求洞察的替代信息来源，以及外部因素如何扰乱这些需求。
