Joy W Chang1, Joel H Rubenstein2,3, Jessica L Mellinger2, Ellyn Kodroff4, Mary J Strobel5, Melissa Scott6, Denise Mack5, Wendy Book5, Kathleen Sable5, Scholeigh Kyle4, Allisa Paliana4, Evan S Dellon7. 1. Division of Gastroenterology, Department of Internal Medicine, University of Michigan, 3912 Taubman Center, 1500 E. Medical Center Drive, SPC 5362, Ann Arbor, MI, 48109, USA. CHJOY@med.umich.edu. 2. Division of Gastroenterology, Department of Internal Medicine, University of Michigan, 3912 Taubman Center, 1500 E. Medical Center Drive, SPC 5362, Ann Arbor, MI, 48109, USA. 3. Veterans Affairs Center for Clinical Management Research, Ann Arbor VA Medical Center, Ann Arbor, MI, USA. 4. Campaign Urging Research for Eosinophilic Diseases, Lincolnshire, IL, USA. 5. American Partnership for Eosinophilic Disorders, Atlanta, GA, USA. 6. Eosinophilic Family Coalition, Cincinnati, OH, USA. 7. Division of Gastroenterology, Center for Esophageal and Swallowing Disorders, University of North Carolina, Chapel-Hill, NC, USA.
Abstract
BACKGROUND: Little is known about patient choice in treatment of eosinophilic esophagitis (EoE). AIM: Determine motivators and barriers to using common EoE therapies and describe patient-reported shared decision making (SDM) and satisfaction with treatment. METHODS: We developed and administered a Web-based survey on factors influencing EoE treatment choice, SDM, and satisfaction. Adults with EoE and adult caregivers of pediatric EoE patients were recruited via patient advocacy groups and at two centers. Descriptive statistics of multiple response questions and multivariable logistic regression were performed to identify predictors of SDM and satisfaction with treatment. RESULTS: A total of 243 adults (mean age 38.7 years) and 270 adult caregivers of children (mean age 9.5 years) completed the survey. Preventing worsening disease was the most common motivator to treat EoE. Barriers to topical steroids were potential side effects, cost, and preferring a medication-free approach. Inconvenience and quality of life were barriers to diet. Potential adverse events, discomfort, and cost were barriers to dilation. Nearly half (42%) of patients experienced low SDM, but those followed by gastroenterologists were more likely to experience greater SDM compared to non-specialists (OR 1.81; 95% CI 1.03-3.15). Patients receiving more SDM were more satisfied with treatment, regardless of provider or treatment type (OR 2.62, 95% CI 1.76-3.92). CONCLUSIONS: Patients with EoE pursue treatment mostly to prevent worsening disease. Common barriers to treatment are inconvenience and financial costs. SDM is practiced most by gastroenterologists, but nearly half of patients do not experience SDM, indicating a substantial area of need in EoE.
BACKGROUND: Little is known about patient choice in treatment of eosinophilic esophagitis (EoE). AIM: Determine motivators and barriers to using common EoE therapies and describe patient-reported shared decision making (SDM) and satisfaction with treatment. METHODS: We developed and administered a Web-based survey on factors influencing EoE treatment choice, SDM, and satisfaction. Adults with EoE and adult caregivers of pediatric EoE patients were recruited via patient advocacy groups and at two centers. Descriptive statistics of multiple response questions and multivariable logistic regression were performed to identify predictors of SDM and satisfaction with treatment. RESULTS: A total of 243 adults (mean age 38.7 years) and 270 adult caregivers of children (mean age 9.5 years) completed the survey. Preventing worsening disease was the most common motivator to treat EoE. Barriers to topical steroids were potential side effects, cost, and preferring a medication-free approach. Inconvenience and quality of life were barriers to diet. Potential adverse events, discomfort, and cost were barriers to dilation. Nearly half (42%) of patients experienced low SDM, but those followed by gastroenterologists were more likely to experience greater SDM compared to non-specialists (OR 1.81; 95% CI 1.03-3.15). Patients receiving more SDM were more satisfied with treatment, regardless of provider or treatment type (OR 2.62, 95% CI 1.76-3.92). CONCLUSIONS: Patients with EoE pursue treatment mostly to prevent worsening disease. Common barriers to treatment are inconvenience and financial costs. SDM is practiced most by gastroenterologists, but nearly half of patients do not experience SDM, indicating a substantial area of need in EoE.
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