Table 5 PROMIS pediatric revised items and reasons for revision

My parents had enough time for me.

My parents spent enough time with me.

Many of the children interpreted the question as the actual amount of time their parents spent with them – half of them revised the questions to "spend time" rather than "had enough time."

I was able to rely on my friends.

I was able to count on my friends.

Some of the children used words like "trust" or "count on" to interpret the question. Two out of six of the children said they weren't sure of the meaning of "rely."

I felt socially accepted by other kids.

I felt accepted by other kids my age.

One of the children didn't know what "socially" meant, but understood the question with it left out.

I did things with other boys and girls.

I did things with kids my age.

All children found the question to be clear and considered both sexes when answering it. However, some defined their interactions with the opposite sex differently than that of their own – it seemed like since the question mentioned the sexes independently it divides the incidence of "doing things" with other children. (I play sports with boys every afternoon. I sometimes play with the girls in gym).

I had enough time to meet friends.

I had enough time to be with my friends.

Three out of six of the children interpreted this question as having time to spend with current friends, two interpreted this as having the time and opportunity to meet new friends, and one child didn't know what this meant. There was an obvious difference in interpretation because of the word "meet."

I felt like I did everything badly.

I felt like I couldn't do anything right

Two of the children interpreted this as meaning doing something that wasn't good enough, while two others interpreted it as doing something "bad" that was worthy of punishment., and the remaining children defined it as "feeling bad" and "my life has been bad." There was a significant degree of difference in interpretation because of the word "badly."

How severe was your asthma?

My asthma was really bad.

Four out of six of the children had a difficultly defining "severe" and three out of six suggested rewording it to "How bad is your asthma."

Did you feel that you got easily exhausted?

I tired easily because of my asthma.

Three out of six of the children had trouble defining or understanding the word "exhausted" and used tired as a synonym to interpret the question.

Did asthma bother you if you wanted to go out?

My asthma bothered me when I was with my friends.

Four out of six of the children defined "go out" as going outside to do something or to play outside. This resulted in some of the children factoring the weather into the state of their asthma. Another kid interpreted "go out" as going to dinner or doing anything else outside of the house. The interpretation was not consistent and if factoring in weather, the degree of variability is even higher.

Did you feel terrible when you were out of breath?

My body felt bad when I was out of breath.

Some children thought that "feeling terrible" was equivalent to feeling guilty after doing something wrong.

Were you scared that you might have to go to the ER?

I was scared that I might have to go to the emergency room or hospital because of my asthma.

One young child didn't know what ER meant.

I could use a mouse for the computer.

I could use a mouse or touch pad for the computer.

One child mentioned that he never used a mouse, but did use a touch pad. Both should be referred to since many laptop users may not use a mouse.

I could drink without help.

I could lift a cup to drink.

* Item revised by project personnel for consistency with other similar items

I could undo snaps.

I could zip up my clothes.

Three out of five of the children weren't sure what the "snaps" were or what the question was referring to. Some thought it was referring to snaps on clothes, while others weren't sure (example – snapping fingers.)

I could turn pages.

I could turn pages in a book.

All of the children mentioned books or magazines when describing the meaning of the question. Two out of five of the children recommended rewording the question to include "turn pages in a book."

I used a special built-up pencil to write.

I used a pencil with a special grip to write.

Many were confused about what a "built-up pencil" is. One defined it as a thick pencil, another thought it was a bendable pencil. However, three out of the five mentioned that they thought it maybe referring to a pencil grip – indicating that it is likely a better descriptor.

I could walk to the bathroom.

I could walk across the room.

Two out of five of the children interpreted the question as being able to find the bathroom and another child referenced going to a bathroom while attending an athletic event in a stadium.

I felt good about my relationship with classmates.

I felt good about how I got along with classmates.

Two out of five of the children said that "relationship" is too hard to understand. A few of the children re-worded it as meaning "to get along" with others.

I worried about my relationships with friends.

I worried about losing a friendship.

Some of the children thought the word "relationship" was too difficult. Also, they interpreted the statement differently. One child thought it meant to be concerned about someone (for their safety or wellbeing), and another thought it meant feeling the need to impress them.

I argued with other kids.

I got into a yelling fight with other kids.

Two out of five of the children recommended not using the word "argue." Three of the five children re-worded the question using the words "yelling" or "fighting."

I felt bad about my relationships with classmates.

I felt bad about how I got along with classmates.

The word "relationship" was dropped because some thought it was too difficult to understand. They also interpreted it differently; one thought it meant to feel bad after arguing, another thought it meant not liking or "feeling good" about classmates.

I got anxious when I went to bed at night.

I worried when I went to bed at night.

Two out of five of the children weren't sure what anxious meant and recommended using a different word.