Introduction: Gastroenterologists (GI) play a key role in the diagnosis and treatment of persons with Celiac disease (CeD). Data is lacking regarding the management of CeD among GI. We conducted a qualitative study to assess the management of CeD among US GI.
Methods: In-depth 1-on-1 phone interviews with board certified GI (minimum 70% of time in direct patient care; minimum of 50 CeD patients/year). To reduce bias, the study was conducted by Cadence, an independent market research firm. Prior to the interviews, a list was prepared that covered the topics of interest. Data was coded and categorized, and a general description of each theme was formulated.
Results: Participants - 18 GI, mean practice experience 14.1 + 7.7 years, mean annual CeD patients treated 119 + 97.
Theme 1 - Typical Patient - Patients are diverse in their demographic characteristics, and are predominantly white, female, with ages ranging from 18 to 55 years. They typically present with abdominal symptoms that are also consistent with Irritable Bowel Syndrome or Ulcerative Colitis Some present with nutrient deficiencies.
Theme 2 – Referral Patterns - Most patients are referred from primary care physicians, and about 25% of referrals received a prior diagnosis of CeD.
Theme 3 – Diagnostic Workup - The typical diagnostic process for GIs begins with serological tests, followed by endoscopy.
Theme 4 – Patient Categorization - Although duodenal biopsies are graded by pathologists (Marsh scale), this is not useful for patient management. Categorization of patients by disease severity is not typically used, but patients may be informally classified based on the number and nature of their symptoms.
Theme 5 – Therapeutic Approach - The primary therapeutic approach for patients with CeD is a Gluten Free Diet (GFD). Patients might also be treated to address acute symptoms (e.g., anti-diarrheals, anti-nausea) and 50% of GI use steroids for severe or refractory cases.
Theme 6 - Biggest Challenge in Treating CeD Patients - The biggest challenge is compliance with a GFD, which is of concern in about 40% of patients. GIs believe that there is a major unmet need for CeD treatments beyond a GFD.
Discussion: More patients are now being evaluated for CeD driven by increasing awareness of the disease. GI respondents consider CeD to be a straightforward disease to diagnose and treat, and the primary therapeutic approach is a GFD. However, compliance with a GFD is challenging for many patients, and new treatment options for CeD are needed.
