Twitter reveals 'early signals' of COVID-19 impact on patients with rheumatic disease
Click Here to Manage Email Alerts
Twitter use revealed “early signals” of drug rationing and other critical behavior changes in patients with rheumatic diseases as they navigated the early months of the COVID-19 pandemic, according to data published in Rheumatology.
“There is an active community of patients with rheumatic and musculoskeletal diseases on social media,” Katja Reuter, PhD, of EULAR, in Zurich, Switzerland, and SUNY Upstate Medical University, in Fayetteville, New York, told Healio Rheumatology. “They share their experiences, and this public data can help inform clinical practice and, in this specific case, the management of a pandemic situation.”
“We analyzed public Twitter user data and found a couple of issues that affected the well-being of this disease community,” Reuter added. “We wanted to shed light on these health-related challenges and bring the conversation into the medical and clinical community.”
To examine how the COVID-19 pandemic affected patients with rheumatic and musculoskeletal diseases using their own posts on Twitter, Reuter and colleagues collected a convenience sample of tweets and conducted a thematic analysis with the resulting data. The researchers analyzed 569 English-language tweets, from 375 users from the United Kingdom, Portugal, the United States, Taiwan, Australia and Canada, that included keywords and hashtags related to both COVID-19 and rheumatic and musculoskeletal diseases.
For this study, such diseases were defined as ankylosing spondylitis, rheumatoid arthritis, psoriatic arthritis, lupus or gout. All included tweets were posted between Feb. 1, 2020, and July 14, 2020. The researchers used the program BotOrNot to exclude tweets from automated accounts. Tweets from fake or commercial accounts, retweets and messages from users who did not clearly express — either in their Twitter profile or in their tweets — their rheumatic disease status were also excluded. Researchers reviewed the included tweets and grouped them into categories based on content. Categories were developed based on research and input from experts.
According to the researchers, a total of eight themes emerged regarding the pandemic’s affect on patients. These included a lack of understanding of COVID-19, critical changes in health behavior, challenges in health care practice and communication with professionals, difficulties in accessing medical care, negative impacts on physical and mental health, work participation issues, the media’s negative impact and raising awareness.
“To me, the most striking thing was that early on in February and March of 2020, members of this patient community shared how they made potentially health-harming changes to their health behavior,” Reuter said. “They rationed their medicine or canceled their in-person medical appointments.”
“This type of patient-generated health data is not widely used in rheumatology research and practice, even though it could provide valuable insight by learning about emerging patient needs and concerns,” she added. “We demonstrate that this data can also serve as an alert system to identify trends that healthcare teams may need to address, such as rationing medication.”
Co-author Elena Nikiphorou, MBBS/BSc(Hons), MRCP, MBBS, PGCME, MD(Res), FHEA, of King’s College London, added that the research sheds light on an important unmet need: Improving communication between health care professionals and people living with rheumatic and musculoskeletal disease.
“This is particularly relevant at times of crisis, such as the current pandemic, where we have to rely on other, less traditional ways, to communicate — as clinicians and other health care providers — with our patients,” she told Healio Rheumatology. “In this regard, pandemics call for unique health communication and education strategies to support the public. The study highlights a potential use of social media, in this case, Twitter.”
Collapse
Click Here to Manage Email Alerts