Characterization of the Lupus Patient Experience Based on Longitudinal Patient Generated Real World Data from a Digital Health App (HEALTH STORYLINES)

OBJECTIVES: Lupus is a chronic autoimmune disease with several sub-types that can cause symptoms such as pain, fevers, rashes, and kidney problems. The heterogeneity of Lupus poses challenges for timely and accurate diagnosis, understanding flares and symptom fluctuations, and effects of the disease and treatment on the patient experience and quality of life. Digital tools are increasingly used in research and care and have become a growing source of patient reported real-world data (RWD) that can include contextual data to complement validated tools such as ePROs/digital endpoints. The aim of this study was to explore how data from apps can be leveraged in the study and management of patients with Lupus.

METHODS: Data from Health Storylines (a disease-agnostic, publicly available self-care management app) in patient-reported Lupus diagnoses from 2017 – 2023 were analyzed. User demographics, tool/widget data, interaction/engagement data, use of synced external devices, and qualitative analysis of free-text data are described.

RESULTS: The majority of the 3,029 patients who reported a Lupus diagnosis were female (96%), median age 42 years (IQR 34 – 51), representing 35 countries (76% USA). All users reported at least one additional comorbidity. Disease management tools were used by 2,023 users; such as the Daily moods (1,911 users), Symptom tracker (1,553 users) and Medication tracker (1,153 users). Qualitative analysis of the free responses in the Daily Moods tool further testifies to the complex psychosocial experience associated with Lupus.

CONCLUSIONS: Data from apps can generate valuable insights that help better characterize the patient experience, and decision-making drivers, symptom patterns, treatment adherence, quality of life, and impact of lifestyle factors on disease management. They can add real-time longitudinal context to enrich existing sources of patient-reported RWD such as registries or ePRO.