OBJECTIVES: Cushing’s, which is rare syndrome, often poses a challenge of having limited RWE data available. Leveraging patient discussions on social media can aid in symptom identification and understanding grievances, contributing to enhanced patient well-being. This study assesses the usability of social media patient data for obtaining real-world insights through Social Media Listening (SML).

METHODS: We conducted a retrospective compilation of more than 17,309 patient conversations from December 2021-23 addressing various aspects of Cushing’s, including symptoms, emotional impacts, diagnostic barriers, treatment concerns, post-surgery challenges, and patient-provider communication using social listening tools and manual gathering techniques to ensure nuanced and detailed analysis. This comprehensive dataset offers a rich understanding of diverse patient concerns within the context of Cushing's syndrome.

RESULTS: Our findings suggest that SML can be valuable especially when patient data is inaccessible, cost prohibitive and limited. In these discussions, 37% (N=6401) focused on patient-provider communication, with 17% about symptoms and 10% on challenges in timely identification of symptoms, Once diagnosed, 16% of patients express apprehension regarding treatment and surgery, engaging in online research to navigate the management of their condition pre- and post-surgery. Interestingly, despite the existence of FDA-approved treatments, there's a growing concern arising from insufficient awareness of available therapies and the potential side effects associated with the treatment.

CONCLUSIONS: This evidence showcases the power of SML to plug major information gaps on rare diseases by uncovering lived patient experiences. Deriving qualitative, real-world data directly from those navigating Cushing’s daily provides more timely insights to enhance provider decision-making and better inform patient-centered improvements across the care continuum.