Abstract Rationale Sjögren’s syndrome primarily affects the exocrine glands, causing dryness symptoms. However, it can also have significant pulmonary manifestations. Social media has provided a platform for patients to create community, share their experiences, seek advice, and ask questions. The conversations in these communities present a rich source of insight into the patient experience, which can be tapped by social listening and natural language processing. We applied these methods to better understand the Sjögren’s community’s experience of pulmonary manifestations, and the impacts of those manifestations on quality of life (QoL). Methods Proprietary models were used to recognize discussion of twelve attributes of daily living (ADLs), extract mentions of clinical concepts and link the extracted spans to a lexical knowledge base (LKB), from 110,614 documents (posts/comments) on the r/sjogrens Reddit community, spanning the years 2012-2024. Concepts corresponding to pulmonary conditions or symptoms were determined using a combination of the LKB’s relations and the expertise of a pulmonologist familiar with the topic (NG). The association between discussion of ADLs and pulmonary concepts was measured using squared pointwise mutual information (PMI2) at the paragraph level. Results The most frequently mentioned pulmonary concepts were “Coughing” (493 documents), “Sinusitis” (327), “Asthma” (238), “Dyspnea” (228), “Pneumonia” (164), “Dry cough” (125), “Bronchitis” (99), and “Interstitial Lung Diseases” (86). For comparison, the most frequently mentioned symptom concepts overall were “Pain” (7,669), “Dryness of eye” (6,450), “Dryness of mouth” (5,805), and “Fatigue” (4,428). Among paragraphs that mention a pulmonary concept, 9.3% discuss the ADL “Sleeping”, compared to a 5.0% baseline among paragraphs that mention any symptom or disease concept (Figure). Other ADLs discussed frequently were “Eating & drinking”, “Physical exercise”, and “Professional activity”. The most highly associated ADL-pulmonary concept pairs, as measured by PMI2, were “Sleeping”-”Coughing”, “Physical exercise”-”Dyspnea”, “Eating & drinking”-”Coughing”, and “Sleeping”-”Dyspnea”. Conclusions Pulmonary concepts are mentioned in approximately 5-10% of the instances of the discussion of Sjögren’s related symptoms, highlighting the relative importance of pulmonary involvement on the QoL of patients with Sjögren’s. The presence of pulmonary symptoms appears to have the highest impact on patients’ sleep and ability to exercise. While dyspnea appears to be the primary driver for reduced physical activity, both cough and dyspnea were associated with impaired sleep. These results can help guide clinicians to enquire about the specific symptoms that seem to be driving the QoL impairment in patients with Sjogren’s and use that data to guide management. This abstract is funded by: Amgen Inc.
Picone et al. (Fri,) studied this question.