Disruptions in the Cystic Fibrosis Community's Experiences and Concerns During the COVID-19 Pandemic: Topic Modeling and Time Series Analysis of Reddit Comments.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Monitoring Mentions of COVID-19 Vaccine Side Effects on Japanese and Indonesian Twitter: Infodemiological Study.

Background: The year 2021 was marked by vaccinations against COVID-19, which spurred wider discussion among the general population, with some in favor and some against vaccination. Twitter, a popular social media platform, was instrumental in providing information about the COVID-19 vaccine and has been effective in observing public reactions. We focused on tweets from Japan and Indonesia, 2 countries with a large Twitter-using population, where concerns about side effects were consistently stated as a strong reason for vaccine hesitancy. Objective: This study aimed to investigate how Twitter was used to report vaccine-related side effects and to compare the mentions of these side effects from 2 messenger RNA (mRNA) vaccine types developed by Pfizer and Moderna, in Japan and Indonesia. Methods: We obtained tweet data from Twitter using Japanese and Indonesian keywords related to COVID-19 vaccines and their side effects from January 1, 2021, to December 31, 2021. We then removed users with a high frequency of tweets and merged the tweets from multiple users as a single sentence to focus on user-level analysis, resulting in a total of 214,165 users (Japan) and 12,289 users (Indonesia). Then, we filtered the data to select tweets mentioning Pfizer or Moderna only and removed tweets mentioning both. We compared the side effect counts to the public reports released by Pfizer and Moderna. Afterward, logistic regression models were used to compare the side effects for the Pfizer and Moderna vaccines for each country. Results: We observed some differences in the ratio of side effects between the public reports and tweets. Specifically, fever was mentioned much more frequently in tweets than would be expected based on the public reports. We also observed differences in side effects reported between Pfizer and Moderna vaccines from Japan and Indonesia, with more side effects reported for the Pfizer vaccine in Japanese tweets and more side effects with the Moderna vaccine reported in Indonesian tweets. Conclusions: We note the possible consequences of vaccine side effect surveillance on Twitter and information dissemination, in that fever appears to be over-represented. This could be due to fever possibly having a higher severity or measurability, and further implications are discussed.

Monitoring Mentions of COVID-19 Vaccine Side Effects on Japanese and Indonesian Twitter: Infodemiological Study

Background The year 2021 was marked by vaccinations against COVID-19, which spurred wider discussion among the general population, with some in favor and some against vaccination. Twitter, a popular social media platform, was instrumental in providing information about the COVID-19 vaccine and has been effective in observing public reactions. We focused on tweets from Japan and Indonesia, 2 countries with a large Twitter-using population, where concerns about side effects were consistently stated as a strong reason for vaccine hesitancy. Objective This study aimed to investigate how Twitter was used to report vaccine-related side effects and to compare the mentions of these side effects from 2 messenger RNA (mRNA) vaccine types developed by Pfizer and Moderna, in Japan and Indonesia. Methods We obtained tweet data from Twitter using Japanese and Indonesian keywords related to COVID-19 vaccines and their side effects from January 1, 2021, to December 31, 2021. We then removed users with a high frequency of tweets and merged the tweets from multiple users as a single sentence to focus on user-level analysis, resulting in a total of 214,165 users (Japan) and 12,289 users (Indonesia). Then, we filtered the data to select tweets mentioning Pfizer or Moderna only and removed tweets mentioning both. We compared the side effect counts to the public reports released by Pfizer and Moderna. Afterward, logistic regression models were used to compare the side effects for the Pfizer and Moderna vaccines for each country. Results We observed some differences in the ratio of side effects between the public reports and tweets. Specifically, fever was mentioned much more frequently in tweets than would be expected based on the public reports. We also observed differences in side effects reported between Pfizer and Moderna vaccines from Japan and Indonesia, with more side effects reported for the Pfizer vaccine in Japanese tweets and more side effects with the Moderna vaccine reported in Indonesian tweets. Conclusions We note the possible consequences of vaccine side effect surveillance on Twitter and information dissemination, in that fever appears to be over-represented. This could be due to fever possibly having a higher severity or measurability, and further implications are discussed.