A qualitative study to explore the patient experience of hypertriglyceridemia-related acute pancreatitis

Abstract

Background: Hypertriglyceridemia (HTG) is a common cause of acute pancreatitis (AP) and can be exacerbated by acquired metabolic conditions or rare inherited disorders (eg, familial chylomicronemia syndrome [FCS]), leading to HTG-induced AP (HTG-AP). HTG-AP is associated with severe abdominal pain typically requiring hospitalization and significantly impacts health-related quality of life (HRQoL). Objective: To understand patients' perspectives on the HRQoL impacts of HTG-AP. Methods: Interviews were conducted with adults with severe/very severe HTG and/or FCS, experiencing ≥1 HTG-AP episode in the past 2 years requiring an overnight hospitalization. An interview guide, developed with patient and clinical expert input, explored symptoms, long-term HRQoL impacts, and management of HTG-AP. Participants completed a background questionnaire, the EQ-5D-5L and select items from the PROMIS Profile v1.0-FCS 28 prior to interview. Interview transcripts were analyzed using thematic and content analysis. Results: Twelve participants completed the study (aged 32-66 years), 3 with genetically confirmed FCS. Participants described a sudden onset of HTG-AP episodes and a gradual recovery following medical intervention (up to several weeks). Participants described substantial symptomatic burden during episodes, including severe abdominal pain, fatigue, gastrointestinal symptoms, fever, and appetite loss. These impacted psychological wellbeing, relationships, and daily activities. Many of the symptoms and impacts on HRQoL (eg, pain, work impacts) persisted between episodes and had long-term effects. Participants reported substantial lifestyle restrictions (eg, dietary) to manage symptoms. Conclusion: HTG-AP has a substantial symptomatic and HRQoL burden during episodes, which can persist postrecovery. Treatments that reduce the incidence of HTG-AP have potential to improve HRQoL.