Table 3 PedsQL™ EoE module respondent debriefing results

The activities and school domain in the first draft PedsQL™ EoE Module were felt to be redundant to the domains in the PedsQL™ 4.0 Generic Core Scales.

Some participants felt that questions were not ordered correctly, forcing them to move back and forth between questions. Question order was changed to reflect these suggestions, resulting in greater clarity. Order of symptoms was changed.

I have stomachaches or bellyaches

Although grammatically incorrect, “stomach aches” or “belly aches” was easier for children to understand.

I have stomach aches or belly aches

I don’t grow as much as other kids my age

5 children and many parents suggested removing. A 30-day time frame is not adequate to determine poor growth.

Deleted

It is hard for me to take my medicines

5 children felt this question was confusing. Language was changed to determine adherence and emotional functioning in relation to treatment, which tested well.

I do not want to take my medicines

I don’t like going to the doctor or hospital

1 child and 5 parents agreed that degree and type of stress varied between types of visits (i.e. a doctor visit, endoscopy, or allergy testing). The group agreed that separating this question into three separate questions would address this difference.

I do not like going to the doctor

I do not like getting an endoscopy (scope, EGD)

I do not like getting allergy testing

Several parents wanted to include other adults like teachers, coaches, family members, and babysitters, with whom many children spend much of their time.

I have trouble talking to other adults about how I feel

I have trouble explaining EoE to other people

Many children misunderstood the word “explaining,” so it was changed to “telling.” Parents found their children often do not explain EoE but do tell peers about EoE.

I have trouble telling other people about EoE

Concern was raised regarding participants not restricting foods as therapy for EoE, and therefore qualifier question was added, indicating section should be completed only if allergic to foods

I eat things I’m not allowed to eat

Several children and parents suggested “sneaking” or “cheating.” This was reviewed with the other cognitive interview respondents who, along with the group, agreed sneaking was a better word. Changed to “allergic” foods to clearly refer to EoE-specific foods, not sugar/sweets.

It is hard for me not to sneak foods that I am allergic to

I don’t want to sit at the table to eat with my family and friends

2 respondents felt that this question was not needed and was not different than other questions in the food and eating domain.

Deleted

I worry about eating a food I’m not supposed to eat

4 children thought that referencing allergic foods was easier to understand. Also, parents suggested feelings of being “mad” or “sad” were articulated as concerns that would not be reflected in just “worry.”

I worry about eating foods I’m allergic to or not supposed to eat

I feel mad (get upset) about not eating foods I am allergic to or not supposed to eat

I feel sad about not eating foods I am allergic to or not supposed to eat