{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,5]],"date-time":"2026-07-05T02:32:35Z","timestamp":1783218755860,"version":"3.54.6"},"reference-count":45,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2023,6,2]],"date-time":"2023-06-02T00:00:00Z","timestamp":1685664000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100004319","name":"Pfizer, Inc.","doi-asserted-by":"publisher","award":["58274089"],"award-info":[{"award-number":["58274089"]}],"id":[{"id":"10.13039\/100004319","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,7,7]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Patients with alopecia areata (AA) report a broad range of psychosocial outcomes beyond those assessed in existing health-related quality of life measures. Yet, to date, no psychometrically validated scale based on patient-reported outcomes (PROs) appears to exist to comprehensively measure these AA-specific psychosocial outcomes.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>The objective of this study was to develop such a scale, the Scale of Alopecia Areata Distress (SAAD), and to provide its initial validation evidence.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Using existing qualitative research on PROs for patients with AA, a pool of 144 items was generated and subsequently reviewed for relevance, redundancy, clarity and comprehensiveness by subject matter experts in AA psychosocial impacts and the research team. This review resulted in a reduced pool of 122 items, which was then administered to adult patients with AA residing in the USA. Exploratory Factor Analysis using Principal Axis Factoring extraction with oblique rotation identified the SAAD\u2019s underlying factor structure. To reduce the SAAD item length, additional item-reduction strategies were used.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>There were 392 participants who responded to the 122 items, each with four or fewer missing item responses. Three iterations of the data analysis plan resulted in a 41-item SAAD with seven underlying factors of psychosocial impact: Emotional and Cognitive Functioning, Romantic Relationships, Family Relationships, Primary Life Responsibilities, Non-Primary Life Responsibility Activities, Stigma, and Self-Perception Change. Each factor demonstrated acceptable to high levels of internal consistency reliability.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>Initial validation evidence of the SAAD-41 scale supports its potential as a comprehensive measure of AA-related psychosocial distress for US-based adults. Further scale validation is needed.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/bjd\/ljad054","type":"journal-article","created":{"date-parts":[[2023,6,3]],"date-time":"2023-06-03T03:40:47Z","timestamp":1685763647000},"page":"71-79","source":"Crossref","is-referenced-by-count":11,"title":["Beyond health-related quality of life: initial psychometric validation of a new scale for addressing the gap in assessing the full range of alopecia areata psychosocial burden"],"prefix":"10.1093","volume":"189","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1912-7584","authenticated-orcid":false,"given":"Kristina","family":"Gorbatenko-Roth","sequence":"first","affiliation":[{"name":"Department of Dermatology, University of Minnesota , Twin Cities, Minneapolis, MN , USA"},{"name":"Department of Psychology, University of Wisconsin-Stout , Menomonie, WI , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Wood","sequence":"additional","affiliation":[{"name":"Department of Psychology, University of Wisconsin-Stout , Menomonie, WI , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mattea","family":"Johnson","sequence":"additional","affiliation":[{"name":"Department of Dermatology, University of Minnesota , Twin Cities, Minneapolis, MN , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1253-3686","authenticated-orcid":false,"given":"Irmina","family":"Wallander","sequence":"additional","affiliation":[{"name":"Department of Dermatology, University of Minnesota , Twin Cities, Minneapolis, MN , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaime","family":"Nugent","sequence":"additional","affiliation":[{"name":"Department of Dermatology, University of Minnesota , Twin Cities, Minneapolis, MN , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7790-3895","authenticated-orcid":false,"given":"Maria","family":"Hordinsky","sequence":"additional","affiliation":[{"name":"Department of Dermatology, University of Minnesota , Twin Cities, Minneapolis, MN , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2023,6,2]]},"reference":[{"key":"2023112114075594600_ljad054-B1","doi-asserted-by":"crossref","first-page":"608","DOI":"10.1111\/jdv.15327","article-title":"HrQoL in hair loss-affected patients with alopecia areata, androgenetic alopecia and telogen effluvium: the role of personality traits and psychosocial anxiety","volume":"33","author":"Russo","year":"2019","journal-title":"J Eur Acad Dermatol Venereol"},{"key":"2023112114075594600_ljad054-B2","doi-asserted-by":"crossref","first-page":"712","DOI":"10.1016\/j.jid.2018.09.024","article-title":"Factors affecting the psychosocial distress of patients with alopecia areata: a nationwide study in Korea","volume":"139","author":"Yoon","year":"2019","journal-title":"J Invest Dermatol"},{"key":"2023112114075594600_ljad054-B3","doi-asserted-by":"crossref","DOI":"10.1016\/j.jaad.2021.06.076","article-title":"Patient and dermatologist-reported impacts of alopecia areata on patients stratified by disease severity: results from a real-world study in the United States","volume":"85","author":"Gandhi","year":"2021","journal-title":"J Am Acad Dermatol"},{"key":"2023112114075594600_ljad054-B4","doi-asserted-by":"crossref","first-page":"867","DOI":"10.1007\/s13555-021-00512-0","article-title":"Patient perspectives of the social, emotional and functional impact of alopecia areata: a systematic literature review","volume":"11","author":"Mostaghimi","year":"2021","journal-title":"Dermatol Ther"},{"key":"2023112114075594600_ljad054-B5","doi-asserted-by":"crossref","first-page":"383","DOI":"10.1001\/jamadermatol.2020.5731","article-title":"Stigmatizing alopecia \u2013 perspectives of a bald dermatologist","volume":"157","author":"Goh","year":"2021","journal-title":"JAMA Dermatol"},{"key":"2023112114075594600_ljad054-B6","doi-asserted-by":"crossref","first-page":"832","DOI":"10.1016\/j.jaad.2017.09.011","article-title":"Alopecia areata is a medical disease","volume":"78","author":"Korta","year":"2018","journal-title":"J Am Acad Dermatol"},{"key":"2023112114075594600_ljad054-B7","article-title":"Association between alopecia areata, anxiety, and depression: a systematic review and meta-analysis","author":"Okhovat","year":"2019","journal-title":"J Am Acad Dermatol"},{"key":"2023112114075594600_ljad054-B8","doi-asserted-by":"crossref","first-page":"806","DOI":"10.1016\/j.jaad.2016.04.035","article-title":"Health-related quality of life (HRQoL) among patients with alopecia areata (AA): a systematic review","volume":"75","author":"Liu","year":"2016","journal-title":"J Am Acad Dermatol"},{"key":"2023112114075594600_ljad054-B9","doi-asserted-by":"crossref","first-page":"561","DOI":"10.1111\/bjd.14497","article-title":"Alopecia areata and health-related quality of life: a systematic review and meta-analysis","volume":"175","author":"Rencz","year":"2016","journal-title":"Br J Dermatol"},{"key":"2023112114075594600_ljad054-B10","doi-asserted-by":"crossref","first-page":"1461","DOI":"10.1177\/1359105317752826","article-title":"Applying the common sense model to predicting quality of life in alopecia areata: the role of illness perceptions and coping strategies","volume":"24","author":"Willemse","year":"2019","journal-title":"J Health Psychol"},{"key":"2023112114075594600_ljad054-B11","doi-asserted-by":"crossref","first-page":"792","DOI":"10.1016\/j.jaad.2018.07.044","article-title":"Association of alopecia areata with hospitalization for mental health disorders in US adults","volume":"80","author":"Singam","year":"2019","journal-title":"J Am Acad Dermatol"},{"key":"2023112114075594600_ljad054-B12","doi-asserted-by":"crossref","first-page":"142","DOI":"10.1177\/1359105308097954","article-title":"Bald is beautiful? The psychosocial impact of alopecia areata","volume":"14","author":"Tucker","year":"2009","journal-title":"J Health Psychol"},{"key":"2023112114075594600_ljad054-B13","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1186\/s41687-020-00240-7","article-title":"\u2018\u201cYou lose your hair, what\u2019s the big deal?\u201d I was so embarrassed, I was so self-conscious, I was so depressed:\u2019 a qualitative interview study to understand the psychosocial burden of alopecia areata","volume":"4","author":"Aldhouse","year":"2020","journal-title":"J Patient Rep Outcomes"},{"key":"2023112114075594600_ljad054-B14","doi-asserted-by":"crossref","first-page":"271","DOI":"10.4103\/ijt.ijt_93_18","article-title":"The impact of alopecia areata on sexual quality of life","volume":"10","author":"Li","year":"2018","journal-title":"Int J Trichol"},{"key":"2023112114075594600_ljad054-B15","doi-asserted-by":"crossref","first-page":"599","DOI":"10.1007\/s13555-021-00508-w","article-title":"Development of the alopecia areata patient priority outcomes instrument: a qualitative study","volume":"11","author":"Winnette","year":"2021","journal-title":"Dermatol Ther"},{"key":"2023112114075594600_ljad054-B16","doi-asserted-by":"crossref","first-page":"149","DOI":"10.1007\/s13555-021-00648-z","article-title":"Validation of the Alopecia Areata Patient Priority Outcomes (AAPPO) questionnaire in adults and adolescents with alopecia areata","volume":"12","author":"Wyrwich","year":"2022","journal-title":"Dermatol Ther"},{"key":"2023112114075594600_ljad054-B17","doi-asserted-by":"crossref","first-page":"1614","DOI":"10.1111\/jdv.17370","article-title":"Quality of life measurement in alopecia areata. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes","volume":"35","author":"Chernyshov","year":"2021","journal-title":"J Eur Acad Dermatol Venereol"},{"key":"2023112114075594600_ljad054-B18","volume-title":"Scale Development: Theory and applications","author":"DeVellis","year":"2021","edition":"5th edn"},{"key":"2023112114075594600_ljad054-B19","volume-title":"Guidance for Industry: Patient-reported outcome measures: Use in medical product development to support labeling claims","author":"US Department of Health and Human Services FDA, Center for Drug Evaluation and Research, Center for Biologics Evaluation, Center for Devices and Radiological Health","year":"2009"},{"key":"2023112114075594600_ljad054-B20","volume-title":"Patient-focused Drug Development: Methods to identify what is important to patients. Guidance for industry, Food and Drug Administration staff, and other stakeholders","author":"US Department of Health and Human Services FDA, Center for Drug Evaluation and Research, Center for Biologics Evaluation","year":"2022"},{"key":"2023112114075594600_ljad054-B21","doi-asserted-by":"crossref","first-page":"1487","DOI":"10.1016\/j.jaad.2020.07.070","article-title":"Integrating colocated behavioral health care into a dermatology clinic: a prospective randomized controlled treatment pilot study in patients with alopecia areata","volume":"84","author":"Gorbatenko-Roth","year":"2021","journal-title":"J Am Acad Dermatol"},{"key":"2023112114075594600_ljad054-B22","author":"Gorbatenko-Roth"},{"key":"2023112114075594600_ljad054-B23","doi-asserted-by":"crossref","first-page":"149","DOI":"10.3389\/fpubh.2018.00149","article-title":"Best practices for developing and validating scales for health, social, and behavioral research: a primer","volume":"6","author":"Boateng","year":"2018","journal-title":"Front Public Health"},{"key":"2023112114075594600_ljad054-B24","author":"Qualtrics"},{"key":"2023112114075594600_ljad054-B25","first-page":"7","article-title":"Best practices in exploratory factor analysis: four recommendations for getting the most from your analysis","volume":"10","author":"Costello","year":"2005","journal-title":"Pract Assess Res Eval"},{"key":"2023112114075594600_ljad054-B26","doi-asserted-by":"crossref","first-page":"99","DOI":"10.1207\/S15327752JPA8001_18","article-title":"Starting at the beginning: an introduction to coefficient alpha and internal consistency","volume":"80","author":"Streiner","year":"2003","journal-title":"J Pers Assess"},{"key":"2023112114075594600_ljad054-B27","author":"IBM Corp"},{"key":"2023112114075594600_ljad054-B28","author":"Microsoft Corporation","year":"2018"},{"key":"2023112114075594600_ljad054-B29","doi-asserted-by":"crossref","first-page":"1594","DOI":"10.1016\/j.jaad.2020.09.028","article-title":"The Alopecia Areata Consensus of Experts (ACE) study part II: results of an international expert opinion on diagnosis and laboratory evaluation for alopecia areata","volume":"84","author":"Meah","year":"2021","journal-title":"J Am Acad Dermatol"},{"key":"2023112114075594600_ljad054-B30","doi-asserted-by":"crossref","DOI":"10.2147\/PPA.S282399","article-title":"Measuring patient quality of life following treatment for alopecia","volume":"15","author":"Thadanipon","year":"2021","journal-title":"Patient Prefer Adherence"},{"key":"2023112114075594600_ljad054-B31","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1111\/j.1365-2230.1994.tb01167.x","article-title":"Dermatology Life Quality Index (DLQI) \u2013 a simple practical measure for routine clinical use","volume":"19","author":"Finlay","year":"1994","journal-title":"Clin Exp Dermatol"},{"key":"2023112114075594600_ljad054-B32","doi-asserted-by":"crossref","first-page":"556","DOI":"10.1016\/j.jaad.2018.01.048","article-title":"Alopecia areata is associated with impaired health-related quality of life: a survey of affected adults and children and their families","volume":"79","author":"Liu","year":"2018","journal-title":"J Am Acad Dermatol"},{"key":"2023112114075594600_ljad054-B33","doi-asserted-by":"crossref","first-page":"473","DOI":"10.1097\/00005650-199206000-00002","article-title":"The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection","volume":"30","author":"Ware","year":"1992","journal-title":"Med Care"},{"key":"2023112114075594600_ljad054-B34","doi-asserted-by":"crossref","DOI":"10.1177\/2050312116671725","article-title":"SF-36 total score as a single measure of health-related quality of life: Scoping review","volume":"4","author":"Lins","year":"2016","journal-title":"SAGE Open Med"},{"key":"2023112114075594600_ljad054-B35","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1093\/ageing\/24.2.120","article-title":"The SF-36 health survey questionnaire: is it suitable for use with older adults?","volume":"24","author":"Hayes","year":"1995","journal-title":"Age Ageing"},{"key":"2023112114075594600_ljad054-B36","author":"Alopecia Areata Symptom Impact Scale (AASIS) [Internet]"},{"key":"2023112114075594600_ljad054-B37","author":"Cardiff University School of Medicine"},{"key":"2023112114075594600_ljad054-B38","doi-asserted-by":"crossref","first-page":"803","DOI":"10.1001\/archderm.138.6.803","article-title":"Scalpdex: a quality-of-life instrument for scalp dermatitis","volume":"138","author":"Chen","year":"2002","journal-title":"Arch Dermatol"},{"key":"2023112114075594600_ljad054-B39","doi-asserted-by":"crossref","first-page":"929","DOI":"10.1185\/03007990902774765","article-title":"Optimal recall periods for patient-reported outcomes: challenges and potential solutions","volume":"25","author":"Stull","year":"2009","journal-title":"Curr Med Res Opin"},{"key":"2023112114075594600_ljad054-B40","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1080\/15325020490890633","article-title":"Reported experiences of persons with alopecia areata","volume":"10","author":"Hunt","year":"2004","journal-title":"J Loss Trauma"},{"key":"2023112114075594600_ljad054-B41","doi-asserted-by":"crossref","first-page":"S51","DOI":"10.1016\/j.jisp.2017.10.008","article-title":"Why finding a treatment for alopecia areata is important: a multifaceted perspective","volume":"19","author":"Rodgers","year":"2018","journal-title":"J Investig Dermatol Symp Proc"},{"key":"2023112114075594600_ljad054-B42","first-page":"22","article-title":"Two views of a community empowerment workshop","volume":"169","author":"Gorbatenko-Roth","year":"2018","journal-title":"Alopecia Areata News"},{"key":"2023112114075594600_ljad054-B43","doi-asserted-by":"crossref","first-page":"S51","DOI":"10.1038\/jidsymp.2013.19","article-title":"Development of the alopecia areata symptom impact scale","volume":"16","author":"Mendoza","year":"2013","journal-title":"J Investig Dermatol Symp"},{"key":"2023112114075594600_ljad054-B44","doi-asserted-by":"crossref","DOI":"10.1111\/j.1468-3083.2012.04629.x","article-title":"Quality of life in alopecia areata: a disease-specific questionnaire","volume":"27","author":"Fabbrocini","year":"2013","journal-title":"J Eur Acad Dermatol Venereol"},{"key":"2023112114075594600_ljad054-B45","doi-asserted-by":"crossref","first-page":"531","DOI":"10.1684\/ejd.2012.1752","article-title":"Development of a disease-specific instrument to measure quality of life in patients with alopecia areata","volume":"22","author":"Endo","year":"2012","journal-title":"Eur J Dermatol"}],"container-title":["British Journal of Dermatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/bjd\/advance-article-pdf\/doi\/10.1093\/bjd\/ljad054\/50513721\/ljad054.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/bjd\/article-pdf\/189\/1\/71\/53664795\/ljad054.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/bjd\/article-pdf\/189\/1\/71\/53664795\/ljad054.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,11,21]],"date-time":"2023-11-21T20:59:37Z","timestamp":1700600377000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/bjd\/article\/189\/1\/71\/7189764"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,6,2]]},"references-count":45,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2023,6,2]]},"published-print":{"date-parts":[[2023,7,7]]}},"URL":"https:\/\/doi.org\/10.1093\/bjd\/ljad054","relation":{},"ISSN":["0007-0963","1365-2133"],"issn-type":[{"value":"0007-0963","type":"print"},{"value":"1365-2133","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2023,7]]},"published":{"date-parts":[[2023,6,2]]}}}