2022
DOI: 10.1111/bjd.20904
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A qualitative interview study to explore adolescents’ experience of alopecia areata and the content validity of sign/symptom patient‐reported outcome measures*

Abstract: Summary Background The content validity (appropriateness and acceptability) of patient‐reported outcome (PRO) measures for scalp hair loss, eyebrow loss, eyelash loss, nail damage and eye irritation has been demonstrated in adults with alopecia areata (AA) but not adolescents. Objectives To explore the content validity of the suite of AA PRO measures and accompanying photoguides in an adolescent sample. Methods Semi‐structured, 90‐min, combined concept elicitation and cognitive interviews were conducted face‐t… Show more

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Cited by 5 publications
(4 citation statements)
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References 37 publications
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“…Overall, the results obtained from the interviews in this study give a comprehensive picture of the burden of AA among adolescents, 8 demonstrating significant psychosocial impact and varying importance of specific symptoms. However, these findings are not reflected by the PROMs, which mostly capture symptom descriptions.…”
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confidence: 78%
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“…Overall, the results obtained from the interviews in this study give a comprehensive picture of the burden of AA among adolescents, 8 demonstrating significant psychosocial impact and varying importance of specific symptoms. However, these findings are not reflected by the PROMs, which mostly capture symptom descriptions.…”
mentioning
confidence: 78%
“…7 In this issue of the BJD, Macey et al report on the content validity of the aforementioned single-item PROMs in adolescents. 8 On the one hand, single-item PROMs have clear advantages. Firstly, they are brief, with minimal burden on patients.…”
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confidence: 99%
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“…In the pediatric population, madarosis is as bothersome as in adults: Macey et al [ 9 , 10 ] described that some adolescents experience loss of eyebrows dramatically as they feel as though they look “weird.” Sometimes what is most feared for this age group is judgment by other people, and that is the reason why absenteeism and discontinued participation in social activities, such as sports, have been reported. Patients tend to cope with and become accepting of their disease, but the emotional impact remains forever.…”
Section: Introductionmentioning
confidence: 99%