Goals: To better understand the characteristics, treatment approaches, and outcomes of patients with esophageal lichen planus (ELP). Background: ELP is a rare, often unrecognized and misdiagnosed disorder. Data on this unique patient population are currently limited to small, single-center series. Study: A multicenter, retrospective descriptive study was conducted of adults diagnosed with ELP over a 5-year period, between January 1, 2015, and October 10, 2020, from 7 centers across the United States. Results: Seventy-eight patients (average age 65 y, 86% female, 90% Caucasian) were included. Over half had at least 1 extraesophageal manifestation. Esophageal strictures (54%) and abnormal mucosa (50%) were frequent endoscopic findings, with the proximal esophagus the most common site of stricture. Approximately 20% had normal endoscopic findings. Topical steroids (64%) and/or proton pump inhibitors (74%) dominated management; endoscopic response favored steroids (43% vs. 29% respectively). Almost half of the patients required switching treatment modalities during the study period. Adjunctive therapies varied significantly between centers. Conclusions: Given its at times subtle clinical and endoscopic signs, a high index of suspicion and biopsy will improve ELP diagnosis, especially in those with extraesophageal manifestations. Effective therapies are lacking and vary significantly. Prospective investigations into optimal treatment regimens are necessary.
Development and modification of a dysphagia question prompt list to improve patient‐physician communication: Incorporating both esophageal expert and 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.
Development of a Preliminary Question Prompt List as a Communication Tool for Adults With Achalasia
Background: Question prompt lists (QPLs) are structured sets of disease-specific questions that enhance patient-physician communication by encouraging patients to ask questions during consultations. Aim: The aim of this study was to develop a preliminary achalasia-specific QPL created by esophageal experts. Methods: The QPL content was derived through a modified Delphi method consisting of 2 rounds. In round 1, experts provided 5 answers to the prompts “What general questions should patients ask when given a new diagnosis of achalasia” and “What questions do I not hear patients asking, but given my expertise, I believe they should be asking?” In round 2, experts rated questions on a 5-point Likert scale. Questions considered “essential” or “important” were accepted into the QPL. Feedback regarding the QPL was obtained in a pilot study wherein patients received the QPL before their consultation and completed surveys afterwards. Results: Nineteen esophageal experts participated in both rounds. Of 148 questions from round 1, 124 (83.8%) were accepted into the QPL. These were further reduced to 56 questions to minimize redundancy. Questions were categorized into 6 themes: “What is achalasia,” “Risks with achalasia,” “Symptom management in achalasia,” “Treatment of achalasia,” “Risk of reflux after treatment,” and “Follow-up after treatment.” Nineteen patients participated in the pilot, most of whom agreed that the QPL was helpful (84.2%) and recommended its wider use (84.2%). Conclusions: This is the first QPL developed specifically for adults with achalasia. Although well-received in a small pilot, follow-up studies will incorporate additional patient feedback to further refine the QPL content and assess its usability, acceptability, and feasibility.