Adults with eosinophilic oesophagitis identify symptoms and quality of life as the most important outcomes

Abstract

Background: Well informed patients who are in cohesive partnership with physicians and who have realistic expectations towards therapy are more likely to be adherent, which results in better disease control. Aim: To assess which therapy goals adults with eosinophilic oesophagitis consider relevant. Methods: Following refinement during three focus groups, a study brochure and questionnaire were sent to 148 patients. Patients ranked the importance (five levels) of short-term (in the next 3 months) and long-term (≥1 year) treatment effect on symptoms, quality of life (QoL), histologically-detected inflammation and fibrosis, endoscopically-detected inflammation, and stricture formation as well as achieving histological remission while asymptomatic. Patients’ characteristics associated with treatment goals were identified using logistic regression. Results: Of 109 respondents (mean age 43 years), 85 were men. Over 90% chose symptoms and QoL improvement as important short- and long-term therapy goals. A greater proportion attributed more importance to long-term reduction in endoscopic (90% vs 73%, P < 0.001) and histological (81% vs 62%, P = 0.002) inflammation, and histologically-detected fibrosis (79% vs 64%, P = 0.018) when compared to short-term reduction in these features. Patients (88%) ranked achieving histological remission while being asymptomatic as important. Gender, therapy use, education level, QoL, symptom severity, and history of dilation were associated with patients’ choice of treatment goals. Conclusions: Patients attributed most importance to improvement in symptoms and QoL. Reduction in biological activity was judged less important, but more relevant in the long- compared to the short-term.