Esophageal Expert Development of a Disease-Specific Question Prompt List for Adults With Eosinophilic Esophagitis: A Modified Delphi Study

Introduction: Question prompt lists (QPLs) are carefully curated collections of disease-specific questions designed to empower patients. They serve as catalysts for increasing patient engagement by prompting them to ask pertinent questions about their disease. Patients with higher engagement are more likely to be active in the management of their care. To date, an EoE-specific QPL has yet to be developed. We aimed to develop a QPL specific to adults with EoE by incorporating input from national esophageal experts. Methods: Sixteen gastroenterologists with expertise in EOE were invited to generate QPL content through a modified Delphi (RAND/University of California, Los Angeles) method, consisting of 2 rounds of independent ratings. In round 1, experts provided 5 answers to the prompt “what general questions should patients ask when being seen for EoE?” and “what questions do I not hear patients asking but given my experience, I believe they should be asking?” In round 2, experts rated each question on a 5-point Likert scale, and responses were rated as “essential” or “important”, determined by an a priori median threshold of ≥ 4.0 (Figure 1). Results: Ten esophageal experts agreed and participated in both rounds (Table 1). Round one generated 100 questions. Questions were combined and modified to reduce redundancy, yielding 60 questions. After round 2, 51 questions (85%) were accepted for inclusion (median value ≥ 4.0) in the final QPL. Questions were then divided into 4 themes based on disease domains: 1. “What is EoE? 2. “Treatment Options”; 3. “Follow-up Surveillance & Long-term Risks”; and 4. “Allergy and Genetic Testing”. The largest number of questions covered “What is EoE?” (16/51 or 31%). Questions with the highest agreement median (5.0) included examples such as “what should I do if I get a food impaction?” and “what are the treatment options?”. Conclusion: This is the first EoE-specific QPL developed in the field of medicine. We anticipate implementation will increase patient engagement and therefore improved health outcomes. Future studies will aim to modify this communication tool and incorporate patient input prior to usability and feasibility testing.Figure 1.: EoE Question Prompt List (QPL) development methodology. Table 1. - Overview of expert panel member characteristics Characteristics Expert panel (N=10) [n (%)] Age [median (IQR)] 49 [41, 53] Sex Male 5 (50%) Female 5 (50%) Race/ethnicity White 5 (50%) Asian 3 (30%) Hispanic 1 (10%) Other 1 (10%) Year since completing medical school [median (IQR)] 20.5 [14, 26.5] Years focusing practice in esophageal disease [median (IQR)] 10 [18, 19.5] No. Eosinophilic esophagitis patients seen per week [median (IQR)] 12.5 [8.5, 15] Clinical practice setting Academic tertiary referral hospital 10 (100%)