EPI Unmet Needs: Barriers to Diagnosis and Long-Term Consequences

This episode confronts the persistent unmet needs in EPI care and the real-world consequences of delayed or missed diagnosis. Jennifer Geremia opens by noting several practical barriers: patient reluctance to add pharmacotherapy, concerns about over-the-counter enzyme supplements (which lack equivalence to prescription PERT), dietary and lifestyle education gaps, and the challenge of patients who cannot use porcine-derived products due to dietary restrictions or religious beliefs. Cost remains a significant barrier for many patients on daily medications.

Sarah Enslin highlights that the typical EPI patient presents to multiple providers—often primary care first—over many visits and sometimes years before receiving an accurate diagnosis. This underscores the need to educate not just gastroenterologists but primary care providers, endocrinologists, and other subspecialists to recognize EPI's signs earlier. Patient education is equally critical: patients must understand that EPI is a chronic condition requiring long-term treatment and consistent adherence.

Dr. Kaul emphasizes that the burden on frontline providers is immense, and platforms like this peer exchange exist specifically to bring specialty-level knowledge to APP providers and PCPs. He raises the importance of targeted, high-yield testing rather than ordering every possible diagnostic test when faced with a vague symptom constellation.

The episode pivots to the long-term sequelae of untreated EPI, which are serious and affect nearly all patients—even those with mild symptoms. Fat-soluble vitamin deficiencies (A, D, E, K), osteoporosis due to bone density loss, and sarcopenia from muscle wasting are flagged as routine monitoring priorities. Quality of life impacts are profound: patients describe social isolation, food fear, inability to dine out, and anxiety about bathroom access. The pill burden compounds daily functioning challenges. Dr. Kaul also draws attention to financial consequences—once labeled with a chronic condition, patients face lasting effects on insurance coverage, representing an additional dimension of morbidity beyond somatic and psychological impacts.

In the next episode, "Who Diagnoses EPI? Defining Roles Across the Care Team," the panel addresses which providers are best positioned to identify EPI and how to distribute responsibility across the multidisciplinary team.