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Table 4 Revised items and reasons for revision

From: Development of a validated patient-reported symptom metric for pediatric Eosinophilic Esophagitis: qualitative methods

Item Focus interviews patient reported symptoms PEESS™ v2.0 Cognitive interviews: respondent debriefing PEESS™ v2.0 content validated
General Patients described how often symptoms occurred and how bad symptoms as different concepts All 36 subjects did not understand medical terminology in PEESS v1.0   All 39 subjects agreed that the visual analog scale for symptom severity improved comprehension Patients preferred items in forms of questions Detailed instructions All 39 subjects preferred PEESS™ v2.0 over PEESS v1.0
Chest Pain 8 reported chest pain. Chest pain, aches or hurt All 39 participants understood the question and preferred to include the additional descriptive words. How often do you have chest pain, ache, or hurt? How bad is the chest pain, ache, or hurt?
Heartburn 4 reported heartburn, 1 reported reflux, 4 reported "burning in chest" Burning in chest, mouth, or throat (heartburn) 38 out of the 39 participants understand heartburn How often do you have heartburn (burning in your chest, mouth, or throat)? How bad is your heartburn (burning in your chest, mouth, or throat)?
Abdominal Pain 5 reported abdominal pain, 8 reported "stomachaches/pain" Stomachaches or bellyaches All participants understood stomachaches and bellyaches. Even though it is grammatically incorrect, patients preferred the separation of stomach and belly to aches. How often do you have stomach aches or belly aches? How bad are the stomach aches or belly aches?
Dysphagia/ Food Impaction 3 reported dysphagia, 16 described "trouble swallowing" 4 reported feeling of "food getting stuck " Trouble swallowing Needing a drink to help swallow food Needing more time to eat than other children the same age. Feeling like food gets stuck in throat or chest All participants understood trouble swallowing. All participants understood needing a drink to help swallow food. Some participants did not know that this was a symptom of EoE. All participants understood needing more time to eat than other children the same age. Some patients did not see this as a symptom of EoE but as a behavioral issue. The participants agreed that how bad did not apply to this question, and there for only frequency was used All participants understood feeling like food gets stuck in throat or chest How bad is the trouble swallowing? How bad is the trouble swallowing? How often do you need to drink a lot to help swallow your food? How bad is it if you don't drink a lot to help swallow your food? How often do you need more time to eat than others? Item deleted How often do you feel like food gets stuck in your throat or chest?
Vomiting 9 reported vomiting, 5 reported "throwing up" Throwing up (vomiting) All participants understood throwing up How often do you vomit (throw up)? How bad is the vomiting (throwing up)?
Nausea 2 reported nausea, 3 reported "feeling like they are going to throw up but don't" Feeling like throwing up, but didn't (nausea) 38 out of 39 participants understood the term nausea. All participants did understand the descriptive phrase for nausea. How often do you feel nauseous (feel like you're going to throw up, but don't)? How bad is the nausea (feeling like you're going to throw up, but don't)?
Regurgitation 6 described as "food coming up throat". Food coming back up throat when eating All patients understood food coming back up throat when eating. How often does food come back up your throat when eating? How bad is the food coming back up your throat when eating?
Poor appetite 13 reported poor appetite or "not wanting to eat" Not eating as much as other children the same age Most patients understood not eating as much as other children as a measure for poor appetite and inadequate weight gain. The participants agreed that how bad did not apply to this question, and therefore, only frequency was used How often do you eat less than others?
Inadequate weight gain 1 reported inadequate weight gain   The 30 day time frame of PEESS v 2.0 does not allow for appropriate measure of inadequate weight gain. Item Deleted
Early Satiety 1 reported early satiety My child has/I have two or more of these problems this often: Other problems. They are: Removed because only one patient reported early satiety as a symptom. All 39 subjects found this question confusing and unnecessary. It was removed in the final version. All 39 subjects found this question unnecessary as all symptoms pertaining to EoE were covered. It was removed in the final version. Item Deleted Item Deleted Item Deleted