Patient-Reported Dysphagia in Adults with Eosinophilic Esophagitis: Translation and Validation of the Swedish Eosinophilic Esophagitis Activity Index

Abstract

The lack of a Swedish patient-reported outcome instrument for eosinophilic esophagitis (EoE) has limited the assessment of the disease. The aims of the study were to translate and validate the Eosinophilic Esophagitis Activity Index (EEsAI) to Swedish and to assess the symptom severity of patients with EoE compared to a nondysphagia control group. The EEsAI was translated and adapted to a Swedish cultural context (S-EEsAI) based on international guidelines. The S-EEsAI was validated using adult Swedish patients with EoE (n = 97) and an age- and sex-matched nondysphagia control group (n = 97). All participants completed the S-EEsAI, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Oesophageal Module 18 (EORTC QLQ-OES18), and supplementary questions regarding feasibility and demographics. Reliability and validity of the S-EEsAI were evaluated by Cronbach’s alpha and Spearman correlation coefficients between the domains of the S-EEsAI and the EORTC QLQ-OES18. A test–retest analysis of 29 patients was evaluated through intraclass correlation coefficients. The S-EEsAI had sufficient reliability with Cronbach’s alpha values of 0.83 and 0.85 for the “visual dysphagia question” and the “avoidance, modification and slow eating score” domains, respectively. The test–retest reliability was sufficient, with good to excellent intraclass correlation coefficients (0.60–0.89). The S-EEsAI domains showed moderate correlation to 6/10 EORTC QLQ-OES18 domains, indicating adequate validity. The patient S-EEsAI results differed significantly from those of the nondysphagia controls (p < 0.001). The S-EEsAI appears to be a valid and reliable instrument for monitoring adult patients with EoE in Sweden.

Eosinophilic esophagitis in adults and adolescents: epidemiology, diagnostic challenges, and management strategies for a type 2 inflammatory disease

“…One approach to hasten EoE diagnosis involves recognizing the concurrent presence of various warning signs, such as difficulty in swallowing, food impaction, reflux symptoms, noncardiac chest pain, a history of atopic/type 2 inflammatory diseases and food allergies, and, in young patients, failure to thrive. 3 …”

“…Eosinophilic esophagitis (EoE) is a chronic type 2 inflammatory disease of the esophagus characterized by eosinophilic infiltration into its tissue. 1 – 4 Studies on EoE endotypes suggest that the condition might progress over time. 39 Common symptoms in adult patients include dysphagia, food impaction, heartburn, and chest pain.…”

“… 39 Common symptoms in adult patients include dysphagia, food impaction, heartburn, and chest pain. 3 , 5 – 7 The pathogenesis is multifactorial and arises from a complex interaction among genetic, intrinsic, environmental factors, as well as antigenic stimuli. 4 , 5 , 7 – 9 Diagnosis relies on a comprehensive evaluation of clinical presentation, endoscopic findings, and biopsy results.…”

Validation of the Swedish Watson Dysphagia Scale for adult patients with eosinophilic esophagitis

“…The Swedish version of the EEsAI (S-EEsAI) has been validated and found suitable for evaluation of symptom severity in patients with EoE, 4 and was included in this study as a comparison in the validity analysis of the S-WDS.…”

“…Patient-reported outcome (PRO) instruments are valuable tools for assessment of symptom burden, yet, there is only one Swedish PRO instrument validated for patients with EoE, the Swedish Eosinophilic Esophagitis Activity Index (S-EEsAI). 4 Prior to the translation and validation of the S-EEsAI, other instruments, un-validated for EoE, were used for symptom evaluation. One of these instruments is the Swedish Watson Dysphagia Scale (S-WDS), which has been validated for assessment of dysphagia in patients with esophageal cancer.…”