Background/Purpose: Insights into the everyday burden and management of a disease relies on patient perspectives, and social media groups focused on specific diseases offer a valuable resource of authentic patient discussions to gain these insights. In particular, social media provides a platform for patients to discuss, compare, and inquire about the relationship between their condition and activities of daily living (ADLs) (e.g., physical exercise or professional activity). The aim of this study is to gain insight into the daily struggles of people living with Sjögren’s through social listening.

Methods: A proprietary text classification model for recognizing activities of daily living (ADLs) in social media conversations was applied to 84,034 posts/comments spanning over 11 years from the Reddit community r/sjogrens. Additionally, spans corresponding to clinical concepts were extracted and linked to a lexical knowledge base using a custom clinical span recognition and linking model, and emotion words/phrases were matched to one of Paul Ekman’s six primary emotions. The association between ADLs and clinical concepts/emotions was measured using PMI2. Finally, TFIDF was used to determine the non-clinical language associated with ADLs.

Results: The ADLs that were discussed most frequently were Eating & drinking (8.4% of documents), Sleeping (5.3%), and Professional activity (3.6%). Clinical concepts associated with Eating & drinking included Dryness of mouth, Saliva, Pain, and Throat; non-clinical words associated with Eating included sugar, dairy, gluten, and coffee. For Sleeping, the top associated clinical concepts were Insomnia, Sleep Apnea, and Mouth, and non-clinical words were bed, hours, morning, and water. Finally, for Professional activity, clinical concepts included Fatigue, Pain, Stress, and Exhaustion, while non-clinical language included job, full time, and home.

The strongest association identified between the six primary emotions and an ADL was between fear and Professional activity. In documents discussing Professional activity, certain words and phrases commonly appeared in those mentioning fear. These terms included symptoms, brain fog, full/part time, side effects, go back, and able [to] work.

Conclusion: Of the twelve ADLs that the model was trained to recognize, Eating & drinking was by far the most common. The clinical language associated with those documents reveal that this is likely due to the effect that dryness of mouth, a hallmark symptom of Sjögren’s, has on a patient’s comfort level during consumption. Dryness of mouth also seemed to be affecting patient’s sleep health. Finally, the clinical and non-clinical language associated with Professional activity, as well as the association with fear, suggest that a constellation of symptoms may be affecting patients’ ability to maintain employment and/or be productive at work.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/using-social-listening-to-understand-the-patient-voice-the-daily-impacts-of-sjogrens-disease/