Development of the Alopecia Areata Patient Priority Outcomes Instrument: A Qualitative Study

    March 2021 in “ Dermatology and therapy ”
    Randall Winnette, Susan Martin, Nimanee Harris, Linda S. Deal
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    TLDR Researchers created a new tool to measure the effects of alopecia areata from the patient's view, focusing on hair loss, daily life, and emotional health.
    In 2021, researchers developed a novel patient-reported outcome (PRO) measure called the Alopecia Areata Patient Priority Outcome (AAPPO) to assess the impact of alopecia areata (AA) from the patient's perspective, in line with US FDA guidelines. The study involved concept elicitation interviews with 20 adults with AA to confirm the relevance of initial concepts and identify additional ones, leading to the creation of an AA consequence model. A thematic analysis of these interviews produced a draft item pool, which was refined through two rounds of cognitive debriefing interviews with 16 patients (9 adults and 7 adolescents). The primary concern for patients was hair loss, with a need to differentiate by location (scalp, eyebrows, eyelashes, body). The AA also affected daily activities and emotional well-being. The final AAPPO instrument included 11 items that capture the most significant AA-related symptoms and impacts over the past week, providing a content-valid tool to measure treatment outcomes important to patients with AA.
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