Joy W. Chang, MD, MS1, Joel Rubenstein, MD, MSCI1, Jessica Mellinger, MD, MSc2, Mary Jo Strobel3, Ellyn R. Kodroff4, Melissa M. Scott, BSN5, Denise Mack6, Wendy Book, MD7, Kathleen L. Sable, MBA8, Scholeigh (Shay) M. Kyle9, Ally Paliana10, Evan S. Dellon, MD, MPH11
1University of Michigan Medical Center, Ann Arbor, MI; 2University of Michigan, Ann Arbor, MI; 3American Partnership for Eosinophilic Disorders, Atlanta, GA; 4Campaign Urging Research for Eosinophilic Diseases, Buffalo Grove, IL; 5Eosinophilic Family Coalition, Cincinnati, OH; 6American Partnership for Eosinophilic Disorders, Trussville, AL; 7Emory University School of Medicine, Atlanta, GA; 8American Partnership for Eosinophilic Disorders, Duluth, GA; 9Campaign Urging Research for Eosinophilic Diseases, Davison, MI; 10CURED Foundation, Wyoming, MI; 11Center for Esophageal Diseases and Swallowing, University of North Carolina, Chapel Hill, NC
Introduction: Because comparative effectiveness trials of eosinophilic esophagitis (EoE) treatments are lacking, patient preferences are often incorporated to select the ideal therapy plan. However, treatment uptake and adherence are often complicated by minimized symptoms, financial cost, convenience, perceived risk and knowledge. We aimed to explore motivators for treating EoE and barriers to using common therapies.
Methods: We developed and administered a web-based survey on factors which affect EoE treatment choices. Adult patients and caregivers of pediatric patients were recruited via patient advocacy groups and at two tertiary care centers. Descriptive statistics of multiple response questions were performed.
Results: Of 513 respondents, 47.4% were adults and 52.6% caregivers of pediatric patients (Table 1). The most common motivator to treat EoE was a desire to prevent complications or worsening disease (88.2% adults, 94.2% peds) (Figure 1). However, only half of adults felt that EoE could be a serious disease (54.1%) and 44.4% had trust that medications or diet could control it. The greatest barriers to topical steroids were potential side effects (58.2% adults, 63.4% peds), financial cost (34.1% adults, 19.3% peds), and preference for a medication-free approach (24.8% adults, 25.9% peds) (Figure 2). Inconveniences of a restrictive diet (36.3% adults, 27.6% peds), multiple endoscopies (30.4% adults, 26.8% peds), poor quality of life and socialization (23.7% adults, 27.6% peds), and inadequate nutrition (28.4% peds) were common barriers to diet therapy. Participants reported avoiding dilation because of belief that it is a high risk procedure (30.7% adults, 36.6% peds), discomfort (30.4% adults, 27.6% peds), and financial cost (31.1% adults, 20.6% peds). Additionally, 24.4% adults felt that they would avoid dilation because of inconveniences around having a procedure.
Discussion: Although only half of patients trusted that therapy could control EoE, preventing complications and worsening disease were the most important factors in pursuing treatment. Common barriers were inconvenience and financial costs. Side effects of steroids, quality of life and nutrition management for diet therapy, and discomfort from dilation were treatment specific barriers. To improve management of EoE and patient engagement, providers need to recognize challenges of both the disease and treatments, elicit patient preferences, and tailor therapy plans to individual attitudes and values.
Citation: Joy W. Chang, MD, MS; Joel Rubenstein, MD, MSCI; Jessica Mellinger, MD, MSc; Mary Jo Strobel; Ellyn R. Kodroff; Melissa M. Scott, BSN; Denise Mack; Wendy Book, MD; Kathleen L. Sable, MBA; Scholeigh (Shay) M. Kyle; Ally Paliana; Evan S. Dellon, MD, MPH. P1172 - ELUCIDATION OF PATIENT MOTIVATORS AND BARRIERS TO PURSUING TREATMENTS FOR EOSINOPHILIC ESOPHAGITIS. Program No. P1172. ACG 2019 Annual Scientific Meeting Abstracts. San Antonio, Texas: American College of Gastroenterology.