5129 Symptoms and Impacts of Hypertriglyceridemia-related Acute Pancreatitis: A Qualitative Study of the Patient Experience
Authors: Kessler Asia Sikora , Aggio Daniel Adam , Howard Ellen , Soffer Daniel , Alonso Jordi , Valdivielso Pedro , Acaster Sarah , Williams Kate 
Published: October 2024

Abstract
Disclosure: A. Sikora Kessler: Employee; Self; Ionis Pharmaceuticals Inc.. Stock Owner; Self; Ionis Pharmaceuticals Inc. D.A. Aggio: Other; Self; Daniel Aggio is an employee of Acaster Lloyd Consulting Ltd. and may hold stock or stock options in the company. E. Howard: Other; Self; Ellen Howard is an employee of Acaster Lloyd Consulting Ltd. and may hold stock or stock options in the company. D. Soffer: Other; Self; Daniel Soffer’s institution has contracts for research with Ionis Pharmaceuticals Inc, and he has served as consultant for Ionis. J. Alonso: Other; Self; Jordi Alonso's institution received consultancy fees from Ionis Pharmaceuticals Inc. P. Valdivielso: Other; Self; Pedro Valdivielso received speaker honoraria and advisories from SOBI and Ionis Pharmaceuticals Inc. Pedro Valdivielso’s institution has contracts for research with SOBI and Ionis Pharmaceuticals Inc. S. Acaster: Other; Self; Sarah Acaster is a shareholder and the co-owner of Acaster Lloyd Consulting Ltd who were funded by Ionis Pharmaceuticals Inc to conduct this research. K. Williams: Other; Self; Kate Williams is an employee of Acaster Lloyd Consulting Ltd. and may hold stock or stock options in the company.
Aim Hypertriglyceridemia-induced acute pancreatitis (HTG-AP) is one of the most common types of AP and can be caused by inherited or acquired metabolic conditions. Familial chylomicronemia syndrome (FCS) is a rare autosomal recessive disorder associated with severely elevated triglycerides and high risk of AP. Onset of HTG-AP is associated with severe abdominal pain, which can impact health-related quality of life (HRQoL). We aimed to understand the experience and long-term HRQoL impact of HTG-AP from the patient perspective. Methods: Interviews were conducted with adults (aged 18+ years) from the UK, US, and Germany with severe/very severe HTG (fasting plasma concentration: ≥500/2000 mg/dL) or FCS, who had experienced ≥1 HTG-AP episode in the past two years resulting in an overnight hospital stay, confirmed via a physician and/or medical/hospital records. An interview guide was developed with input from a patient advocate and clinical experts, with open-ended questions on symptoms, long-term impacts and management of HTG-AP. The study was approved by an independent ethics board. Participants provided informed consent and completed a background questionnaire, line drawing task, and the EQ-5D-5L prior to interview. Interviews were conducted via videoconference, and were audio recorded and transcribed. Transcripts were analysed in MAXQDA using thematic and content analysis. Data saturation was monitored. Relationships between symptoms and impacts were illustrated in a conceptual model. Results: Twelve interviews were conducted with individuals with HTG-AP (aged 32-66 years), three of whom had genetically confirmed FCS. Participants reported an average of 9 HTG-AP episodes at time of interview (min 1, max 30). Participants described a rapid onset of HTG-AP episodes (within an hour of symptom onset). Following medical intervention, participants described a gradual recovery (up to several weeks). During episodes, participants described substantial symptomatic burden, including severe abdominal pain, back pain, fatigue, gastrointestinal symptoms, fever, and appetite loss. These had an impact on psychological wellbeing, relationships, and ability to carry out daily activities (e.g., work, leisure/social activities). The burden was most severe during episodes, but many of the same symptoms and HRQoL impacts (e.g., pain, work impacts) persisted between episodes. Many impacts (e.g., social activities and psychological wellbeing) had long-term effects. Participants reported substantial lifestyle restrictions to manage symptoms (e.g., dietary). Conclusion: Individuals with HTG-AP experience substantial symptomatic and HRQoL burden during episodes of HTG-AP. Many symptoms and impacts persist post-recovery and have long-lasting effects. Patients need treatments to prevent HTG-AP and its long-term effects on HRQoL.
Presentation: 6/3/2024