Berry, Rani

Background: Question prompt lists (QPLs) are structured sets of disease-specific questions intended to encourage question-asking by patients and enhance patient-physician communication. To date, an EoE-specific QPL has not been developed for EoE patients. Aim: To develop a preliminary QPL specific to adults with EoE by incorporating input from international esophageal experts. Methods: Sixteen experts were invited to generate QPL content through a modified Delphi (RAND/University of California, Los Angeles, CA) method consisting of 2 rounds of independent ratings. In round 1, experts provided 5 answers to the prompts “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 rated as “essential” or “important” (determined by an a priori median threshold of ≥ 4.0) were accepted for the EoE QPL. Results: Ten esophageal experts participated in both rounds. Round 1 generated 100 questions. Questions were combined and modified to reduce redundancy, yielding 57 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 and Long-term Risks,” and (4) “Allergy and Genetic Testing.” The largest number of questions covered was “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 preliminary EoE QPL developed in the field of medicine. We hope implementation enhances effective patient-physician communication by encouraging patients to ask relevant questions that experts prioritized. Future studies will aim to modify this communication tool by incorporating patient perspectives

AbstractBackgroundQuestion prompt lists (QPLs) are structured sets of disease‐specific questions, intended to encourage question‐asking by patients and enhance patient‐physician communication. To date, a dysphagia‐specific QPL has not been developed for patients with esophageal dysphagia symptoms. We aim to develop a dysphagia‐specific QPL incorporating both esophageal expert and patient perspectives, applying rigorous methodology.MethodsThe QPL content was generated applying a two‐round modified Delphi (RAND/UCLA) method among 11 experts. In round one, experts provided five answers to the prompts: “What general questions should patients ask when being seen for dysphagia?” and “What questions do I not hear patients asking but, given my experience, I believe they should be asking?” In round two, experts rated proposed questions on a 5‐point Likert scale. Responses rated as “essential” or “important”, determined by an a priori median threshold of ≥4.0, were accepted for inclusion. Subsequently, 20 patients from Stanford Health Care were enrolled to modify the preliminary QPL, to incorporate their perspectives and opinions. Patients independently rated questions applying the same 5‐point Likert scale. At the end, patients were encouraged to propose additional questions to incorporate into the QPL by open‐endedly asking “Are there questions we didn't ask, that you think we should?”Key ResultsEleven experts participated in both voting rounds. Of 85 questions generated from round one, 60 (70.6%) were accepted for inclusion, meeting a median value of ≥4.0. Questions were combined to reduce redundancy, narrowing down to 44 questions. Questions were categorized into the following six themes: 1. “What is causing my dysphagia?”; 2. “Associated symptoms”; 3. “Testing for dysphagia”; 4. “Lifestyle modifications”; 5. “Treatment for dysphagia”; and 6. “Prognosis”. The largest number of questions covered “What is causing my dysphagia” (27.3%). Twenty patients participated and modified the QPL. Of the 44 questions experts agreed were important, only 30 questions (68.2%) were accepted for inclusion. Six patients proposed 10 additional questions and after incorporating the suggested questions, the final dysphagia‐specific QPL created by esophageal experts and modified by patients consisted of 40 questions.Conclusions & InferencesIncorporating expert and patient perspectives, we developed a dysphagia‐specific QPL to enhance patient‐physician communication. Our study highlights importance of incorporating patient perspective when developing such a communication tool. Further studies will measure the impact of this communication tool on patient engagement.