OBJECTIVES: People with chronic pancreatitis (CP) experience exocrine pancreatic insufficiency (EPI) from a lack of innate digestive enzymes, leading to maldigestion/malnutrition and reduced quality of life (QoL). To better understand the impact of EPI, a dual approach using a traditional US-based registry with gastroenterology sites and an online community (OC) with patient support and real-world evidence reporting is being implemented. We describe collection of patient-reported information from the OC via a survey/research event with a gastroenterologist.

METHODS: The OC, administered by HealthUnlocked and moderated by Mission: Cure, includes patients, care partners, and advocates. In addition to regular community activity, research events such as rapid polls, custom surveys, and expert-led events are conducted to collect real-world evidence. An OC research event was conducted to determine the most important lifestyle issues that people living with CP face during the holiday season. OC members selected lifestyle questions from a list of 10 presented through a survey; the top 5 questions were answered by a gastroenterologist. The most common questions chosen by the OC members are presented here.

RESULTS: Of the potential questions presented to 29 survey-takers, those most commonly directed to the gastroenterologist were: “Do you have any tips about managing sudden onset of gas, bloating, and/or abdominal pain when I’m not at home?” (n=26); “What is the best way to deal with the change in my routine diet and the symptoms it may cause?” (n=22); and “Do you have any tips or techniques to help me to deal with stress?” (n=19).

CONCLUSIONS: Results from this ongoing research event identified the importance of mental health, QoL, and symptom control challenges/concerns that patients with CP and/or EPI have on a day-to-day basis. The OC is identifying real-world evidence challenges that patients face, which may lead to improvements in quality of care and patient satisfaction.