Background/Purpose: Patients living with systemic lupus erythematosus (SLE) must typically adapt to altered quality of life and tailor coping mechanisms (e.g. non-pharmacological interventions) to address their personal “new normal”. Patient interactions in online communities provide an opportunity to understand their new way of living with SLE, outside of a clinical setting.

Methods: Topics related to the new normal in SLE were studied by analyzing free text data from patients self-reporting a diagnosis of SLE on PatientsLikeMe, an online community and health network. These data included patients’ brief autobiographies, forum posts and replies, and annotation of their health data. Latent Dirichlet allocation (LDA), a form of probabilistic topic modeling, was used to identify topics from within this corpus. Further analysis of relevant topics, identified by manual review, focused on the language used by patients, effect on their lives and the steps taken to mitigate impact.

Results: 138,409 free-text SLE-related posts from 15,060 users on PatientsLikeMe were analyzed using LDA. 150 unique topics – clusters of related words – were identified, including 12 topics identified as relevant patients’ “new normal” in living with SLE. These 12 topics were then named to reflect their component words and grouped into 3 domains; Emotions (Uncertainty, Isolation, Guilt), Symptoms (Fatigue, Pain, Hair Loss) and Daily Challenges (Inability to work, limited time outdoors, daily variability, managing drugs, hiding symptoms/illness and proving symptoms/illness).

Patients reported feeling overwhelmed by pain and fatigue. Patients describe a constant struggle to overcome isolation and communicate their feelings to their family, friends, health care providers (HCPs) and employers. This leads to hiding symptoms, withdrawal and feelings of guilt. In addition, pain management strategies from physicians feel largely ineffective, as do many drug treatments. Patients struggled with the unpredictability of these symptoms and conveyed a sense of resignation and acceptance to this new normal. They accepted that many daily activities (e.g. taking a shower or housework) would never be easy again and adapted their lives accordingly. Patients discussed how they were forced to restrict their social lives and seek support from others for family responsibilities such as childcare. Many patients reduced, changed or stopped employment, negatively impacting finances and self-esteem. However, patients also use the online community to help support each other in their shared experiences with SLE, sharing creative lifestyle modifications, such as using cell phone alarms for limiting sun exposure.

Conclusion: Computational approaches that summarize large volumes of patient-generated free text data in online communities provide direct insight into the ways in which SLE patients live with their condition and how they manage the “new normal” in their lives with its changed lifestyle and expectations. These findings can be used to highlight unmet medical needs from the patient perspective, and help patients and their HCPs create a more complete approach to SLE management.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/how-do-patients-describe-their-new-normal-in-systemic-lupus-erythematosus-use-of-probabilistic-topic-modelling-to-characterize-patients-experiences-recorded-in-an-online-he/