Abstract
INTRODUCTION: Given the similar effectiveness but differing philosophies of treatments for eosinophilic esophagitis (EoE), shared decision making (SDM) between patients and providers is important for improving treatment and adherence. Because little is known about this area, we aimed to describe patient-reported SDM and satisfaction in EoE care. METHODS: We developed and administered a web-based survey about SDM and satisfaction around EoE treatment based on a validated 9-item SDM questionnaire (composite range 9 – 54, low SDM defined as < 32). Adults and caregivers of pediatric patients were recruited via patient advocacy groups and at two tertiary care centers. Regular care was defined by seeing the specialty provider at least annually. Multivariable linear and logistic regression was performed to identify predictors of SDM and satisfaction with treatment. RESULTS: A total of 243 (47%) adults (mean age 38.7 years, SD 12.1) and 270 (53%) caregivers of pediatric patients (mean age 9.5 years, SD 4.5) completed the survey. A majority (90%) had a diagnosis of EoE alone. Among adults, 31% had regular care with both gastroenterology (GI) and allergy, 30% only with GI, 7% only with allergy, and 32% without specialty care. In contrast, a large majority of the pediatric cohort (70%) had regular follow-up with both GI and allergy, 25% only with GI, 3% only with allergy, and 2% with neither subspecialist. Patients followed by GI providers were more likely to experience greater SDM compared to non-specialists (adjusted β = 6.85; 95% CI 3.31-10.4) (Figure 1, Table 1). Despite this, nearly half of adults (44%) and children (40%) experienced low SDM for EoE management. SDM with allergists alone was similar to non-specialists. There was no difference between adults and children for the effects of provider type. More SDM occurred when patients perceived providers as comfortable with choosing a therapy outside of their recommendation (Table 1). Those receiving more SDM were more satisfied with current treatment, regardless of provider or treatment type (OR 2.77, 95% CI 1.86-4.11; Table 2). CONCLUSION: SDM around EoE care is practiced most by gastroenterologists and when patients perceived provider comfort with various options, however many patients still do not experience joint decision making. Because patients are more likely to be satisfied with any treatment when SDM is practiced, it is important to improve patient-centered communication and engagement in managing EoE.
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