S44 Analysis of Real World Patient Experience With Pancreatic Enzyme Replacement Therapy (PERT) in the Treatment of Exocrine Pancreatic Insufficiency (EPI)

Abstract

Introduction: PERT is the standard of care treatment for EPI. Real-world data on patient experience with PERT is lacking. The aim of this patient survey was to assess patient understanding and their use of PERT. Methods: An IRB-approved survey of 75 members of Inspire’s Pancreatic Cancer and Pancreatitis Support communities (inspire.com) was conducted. Eligibility included having EPI secondary to chronic pancreatitis (CP), pancreatic cancer (PC), pancreatic surgery (PS), or acute pancreatitis (AP), and current or past PERT experience. 76% were male, 85% white, 56% age 50-69 yrs, 56% living in a large city/ suburb. 67% reported CP, 19% PC, 5% PS (non-CP/PC), 9% AP (no concomitant CP). PERT was prescribed by gastroenterologist/pancreatologist in 64%; oncologist 17%; surgeon 11%; others 8%. Results: 28% of respondents felt their physician did not provide detailed information about EPI and 31% did not get an explanation about how PERT works. 83% searched for EPI information mainly online. HCP counseling on need for chronic PERT use was reported in 67% of those on PERT (n=60) and 27% in those no longer on PERT (n=15). In the latter group, no patient took PERT for more than 5 years despite CP/PC history. 11% reported receiving no instructions on how and when to take PERT; 21% were instructed to take PERT with food or meals and no instructions for snacks, and 21% reported not taking PERT with any snacks. 59% were instructed to take PERT solely before or after eating and 56% were taking it as such. 36% reported PERT doses< 40,000 LU/meal. 10-15% did not understand how many capsules to take per meals or snacks. 24% decreased dosage mainly because they felt there will be no health consequences. 21% reported purposely skipping PERT mostly because they felt that PERT was not needed with every meal/snack. Patients stopped PERT mainly due to pill burden. 39% reported absence of follow-up by their physician on how they are doing since start of PERT. 84% of those with physician follow-up were asked about their EPI symptoms. Conclusion: Up to 1/3 of participants reported gaps in patient-physician dialogue regarding how to use PERT. More than half took PERT solely before or after eating. 36% of patients were underdosed (based on ACG Guidelines for CP). ∼ 1/4 skipped PERT or decreased the dose. Targeted education interventions are warranted to improve barriers to care and sequelae of untreated/undertreated EPI.