Experiences of the Patient With Chronic Pancreatitis Including Individuals With Exocrine Pancreatic Insufficiency: Findings From a Patient-Centered Observational Analysis of an Online Community

Introduction: Patients with exocrine pancreatic insufficiency (EPI) secondary to chronic pancreatitis (CP) generally experience maldigestion/malnutrition that may contribute to reduced quality of life (QoL). To understand needs/burdens of individuals impacted by CP, a US-based registry and online community with structured/unstructured data collection activities were established. This online community forum is an emerging way of collecting data to better understand patients’ experiences with EPI and CP, separate from the way the traditional registry captures data. This updated observational analysis describes patients’ experiences by identifying the latest themes discussed by online community members. Methods: The online community is administered by HealthUnlocked and moderated by Mission:Cure. Community posts from September 16, 2022, to March 15, 2023, were analyzed thematically to identify/determine common themes discussed by members. Results: As of March 15, 2023, a total of 488 members were in the online community. Members contributed 143 posts and 815 comments. Key topics were diagnosis, self-care, pain/symptom management, and reflections on CP (Figure 1). Related to diagnosis, members found solace through sharing expectations of symptom pain, frequency, and intensity. Having resources, toolkits, and shared experiences empowered members and provided valuable/practical advice for managing symptoms; members appreciated shared knowledge on navigating appointments, maintaining patience with the diagnosis process, and future therapy prospects. Self-care methods shared were strategies during CP flare-ups; themes were following a plant-based diet and management of CP during holidays. Pain/symptom management discussion included decision-making support, struggles with medication absorption, and risks/benefits of medications mitigating CP symptoms (eg, steroids). Members reflected on CP, describing it as a deceptive disease where suffering cannot be seen and QoL is negatively impacted. Visual depictions of CP focused on pain. Conclusion: Experiences of community members were focused on diagnosis, self-care, pain/symptoms, and general reflections. Data from online posts illustrate patient concerns that may better inform clinicians on the management of this patient population. Results reinforce/expand on areas previously highlighted (ie, pain, diagnosis, and diet) for clinicians to focus patient education to optimize care for patients with CP, including those with EPI.Figure 1.: Key themes identified from thematic analysis and selected member quotes from the online community.