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‐to‐face with adolescents who experienced ≥ 50% AA‐related scalp hair loss. Transcripts underwent thematic and framework analysis. Results Eleven adolescents (aged 12–17 years, 55% female, 45% nonwhite) diagnosed with AA for 5·9 years (mean) participated. Participants had 69·6% scalp hair (mean) and current eyebrow (82%) and/or eyelash loss (82%) and/or nail involvement (36%). Adolescents reported scalp, eyebrow and eyelash hair loss as their top three most bothersome signs/symptoms. Despite mostly accepting their AA, impacts related to visible areas of hair loss were prominent. Participants demonstrated good understanding and appropriate use of the PRO measures, and advocated including hair loss percentages alongside descriptive categories in the Scalp Hair Assessment PRO™. Results confirmed treatment success thresholds established with adults: achievement of ≤ 20% scalp hair loss, no/minimal eyebrow and eyelash loss, no/a little nail damage and eye irritation (PRO measure categories 0 or 1). Conclusions The Scalp Hair Assessment PRO™, PRO Measure for Eyebrows™, PRO Measure for Eyelashes™, PRO Measure for Nail Appearance™ and PRO Measure for Eye Irritation™ and accompanying photoguides are fit‐for‐purpose self‐reported measures of AA signs/symptoms that are impactful to adolescents with AA.

Content validity of five single‐item instruments in adolescents with alopecia areata

“…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.…”

“…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.…”

“…However, incorporating this perspective into clinical research and daily practice is only possible to a limited extent when PROMs are used for describing objective symptoms. In four of the five PROMs in this study (all except the PRO Measure for Eye Irritation TM ), 8 objectively measurable symptoms are assessed (e.g. amount of hair loss).…”

Impact and Management of Loss of Eyebrows and Eyelashes

“…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.…”