Mo1219 IMPACT OF EOSINOPHILIC ESOPHAGITIS DISEASE ACTIVITY ON QUALITY OF LIFE: RESULTS FROM A PROSPECTIVE PATIENT REGISTRY

Gastroenterology(2020)

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Abstract
Background:The Dysphagia Symptom Questionnaire (Hudgens et al., DSQ v4.0;J. Patient Reported Outcomes (2017) 1:3) is a daily patient-reported outcome (PRO) measure that was developed and validated to assess dysphagia related to eosinophilic esophagitis (EoE).The daily DSQ score ranges from 0 (no dysphagia) to 6 (dysphagia requiring medical attention to get relief); the daily score is considered missing if the patient has not eaten any solid food since waking up in the morning.Given that patients may report not eating solid food for reasons related to dysphagia, a modified DSQ was developed by adding a new item (Q1A) to assess if patients reported not eating solid food because of their problems with swallowing.The objective of this study was to evaluate the content validity of the modified DSQ.Methods: Cognitive debriefing (CD) interviews of the modified DSQ were conducted to 1) examine patient comprehension, including relevance, recall period, and suggestions for change, 2) understand if responses to item Q1A could be used as a proxy for disease severity, and 3) infer a score for Q1A relative to other items in the DSQ by exploring the patient experience of not eating solid food.Eligible participants had diagnosed EoE and ‡ 1 dysphagia event during the past two weeks.A subset of participants had heightened dysphagia severity (i.e.patients had to do things such as drink liquids, cough/gag, vomit, or seek medical attention to get relief) and had avoided eating solid food during the past one week at the time of screening.Results: Twenty-four EoE patients were interviewed.All items on the DSQ and the newly added Q1A were well understood and found to be relevant.No major issues were identified with the response options or recall period.Patients mentioned that they may not eat solid food on some days either due to fear of potential impaction and / or during recovery from a recent stressful dysphagia event.However, not eating solid food for long periods of time was rare.Even in situations when patients had to take multiple actions to get relief from a recent dysphagia episode, patients were likely to start eating solid food within a day.Conclusions: The newly added Q1A is relevant, understandable and can provide useful information on days when patients do not eat solid food by asking patients if this is related to their difficulty with swallowing.Patients who respond to Q1A by indicating that they did not eat solid food because of their problems with swallowing are likely experiencing severe disease burden; assigning the worst DSQ score (i.e. a score of 6 for that day) to such responses may be an optimal approach to measure disease severity among patients with EoE. Mo1218
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