Background/Purpose: Social media and online forums are popular for understanding patients’ feelings and concerns, which are hard to assess with traditional methods. Infodemiology collects and analyzes health content from social media (1). This study aimed to describe RA patients’ discussions on social media and their perceptions of life with the disease.

Methods: Posts related to RA patients geolocated in France between Jan 2018 and Dec 2019 (to avoid COVID-19 pandemic influence) were mainly extracted from 10 general and specialized, publicly available online forums. The extracted messages were cleaned and anonymized. Automated language processing methods were used to analyze patients’ verbatim comments. We used MedDRA and a Biterm Topic Model (BTM) algorithm to identify and analyze discussed topics. We used qualitative methods to describe issues patients raised about the impact of the disease on their quality of life (QoL).

Results: The extraction yielded 9,326 posts. After curation, 6,029 posts from 3,772 patients were included and analyzed. Patients’ data mostly came from the patient association blog ParlonsdelaPR (41%), X (exTwitter) (21%) and Doctissimo health forum (11%). Posts publication did not follow any seasonality.

Sex and age were reported in 77% and 89% of posts, respectively. Among them, 79% (2,300/2,904) were women and the median age was 41 years-old (range 19-61).

Among these 6,029 posts, the top 3 topics of patients’ discussions were daily pain (27%; considering and managing pain), finding community support (20%; seeking information on RA and treatments, empathy and encouragement) and personal testimonies (17%; medical history and wandering, disease acceptation, living and coping with RA, self-management).

The impact on QoL was mentioned by 54% (2,052/3,772) of the posts. Of these, 76% described physical health effects (e.g.: pain, fatigue, weight gain), then psychological effects (51%; e.g.: stress, anxiety, depressive mood, fear of the disease, risk of disability and changes in physical appearance) and limitation in physical and social activities (40%; e.g.: mobility, sport, work). For some patients experiencing difficulties, the publication of negative contributions could be counterproductive.

One-third of posts (1,077/3,772) mentioned their overall care and the difficulty to deal with family and friends as well as caregivers. Of these, 19% provided lifestyle advice (exercise, reducing alcohol, exclusion diet, complementary-alternative medicine) but the benefit of smoking cessation was lacking.

Conclusion: RA patients use social media for coping strategies, support, and information. Despite various treatments, they remain uncertain about their disease and future. Negative messages can reduce their empowerment and motivation. Although patients make lifestyle changes, smoking cessation is often not prioritized. COVID-19 pandemic influence on patients’ contribution in social media will be analyzed through a further pre-and post-COVID-19 periods analysis.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/rheumatoid-arthritis-patients-voice-first-an-original-approach-based-on-infodemiology-using-social-media-content-results-from-the-prima-study/