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Table 3 ObsRO Palatability Instrument – Supportive Caregiver Qualitative Data

From: Qualitative modification and development of patient- and caregiver-reported outcome measures for iron chelation therapy

Item (Version)

Concept

Quotation

Subject ID

Item 1

(Version 1)

Reaction to taste

“Did she like it or did she not like it? Did she like make a face or – when taking the medication?”

INTERVIEWER: Make a face? Is that what she would do?

“Mm-hmm [to indicate yes]. If it was nasty”

0205

Item 1

(Version 1)

Reaction to taste

“He just would frown”

0203

Item 1

(Version 2)

Reaction to taste

“He’d make a face. He would spit it out. He would, you know, say, agh, this is horrible. He would have something to say if it had any – especially if it had a bad taste to him.”

0206

Item 1

(Version 2)

Reaction to taste

“From facial expressions, say so – not want to take it”

0208

Item 2 (Version 1)

Reaction to feel

“If she gagged, did she throw up or did she, you know, spit up or make some type of frown face?”

0201

Item 4

(Version 1)

Reaction to taste after swallowing

“It couldn’t have been nasty, because she would have reached for something”

0201

Item 4

(Version 1)

Reaction to taste after swallowing

“Well, you can just see the reaction on her face. There would be a frown or a sound, you know? Reaction to the taste of the medicine’s where she makes a sound or a facial impression.”

0204

Item 4

(Version 1)

Reaction to taste after swallowing

“She would have made a face.”

0205

Item 4

(Version 1)

Reaction to taste after swallowing

“There’s times there is a little grit piece left. And she usually sticks her tongue out to show me or she’ll pull her lip down to show me, in which case I’ll usually give her a drink of water and have her swallow it.”

0601

Item 2

(Version 2)

Reaction to aftertaste

“Just facial expression or, you know, a comment or refusing to take it again”

0208

Item 2

(Version 2)

Reaction to aftertaste

“Making faces after she swallowed it, or you know, smacking her mouth”

0207

  1. Abbreviation: ObsRO, observer-reported outcome