{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T01:47:44Z","timestamp":1784166464771,"version":"3.55.0"},"reference-count":19,"publisher":"MJS Publishing, Medical Journals Sweden AB","license":[{"start":{"date-parts":[[2025,7,19]],"date-time":"2025-07-19T00:00:00Z","timestamp":1752883200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Acta Derm Venereol"],"abstract":"<jats:p>Alopecia areata significantly impacts patients\u2019 emotional and psychosocial well-being. This survey investigated patients\u2019 perspectives on disease severity and its impact on quality of life. The study evaluated whether disease assessment tools (Severity of Alopecia Tool, Dermatology Life Quality Index, and Patient Unique Stigmatization Holistic tool in dermatology) reflect patients\u2019 perceptions of their condition. The study was conducted as an anonymous social media survey in Norway and Denmark. The questionnaire was divided into 3 main sections: (i) demographics and disease characteristics; (ii) disease severity and QoL measures; and (iii) patient perception and psychosocial impact. A total of 360 individuals participated in the survey reporting alopecia areata as mild (15%), moderate (29%), or severe (58%). Some 61% reported alopecia areata to interfere with their daily or weekly activities. All disease assessment tools demonstrated an age-dependent pattern, where scores were highest in the youngest (&lt;\u200930 years) responder group. The relationship between Dermatology Life Quality Index and Severity of Alopecia Tool scores was found to be weak (R-squared\u2009=\u20090.08). Similarly, the correlation between Dermatology Life Quality Index and self-reported disease severity was also weak (R-squared\u2009=\u20090.136). This study demonstrates that there is a clear need for the development of more comprehensive, validated, and patient-centred assessment tools that can accurately reflect the physical, emotional, psychological, and social challenges faced by individuals with alopecia areata. <\/jats:p>","DOI":"10.2340\/actadv.v105.43318","type":"journal-article","created":{"date-parts":[[2025,7,19]],"date-time":"2025-07-19T10:40:54Z","timestamp":1752921654000},"page":"adv43318","source":"Crossref","is-referenced-by-count":3,"title":["Alopecia Areata: Impact on Patients\u2019 Quality of Life and Disease Perception: A Survey-Based Study"],"prefix":"10.2340","volume":"105","author":[{"given":"Christian","family":"Vestergaard","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel de la Rosa","family":"Carrillo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Randeep","family":"Mandla","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne Grete","family":"Fr\u00f8strup","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanne T.","family":"Gren","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Petri","family":"V\u00e4nni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna-Kaisa","family":"Asikainen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristian","family":"Kofoed","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cato","family":"M\u00f8rk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1183","published-online":{"date-parts":[[2025,7,19]]},"reference":[{"key":"117626","doi-asserted-by":"crossref","unstructured":"Lintzeri DA, Constantinou A, Hillmann K, Ghoreschi K, Vogt A, Blume-Peytavi U. Alopecia areata: current understanding and management. J Dtsch Dermatol Ges 2022; 20: 59\u201390.","DOI":"10.1111\/ddg.14689"},{"key":"117627","doi-asserted-by":"crossref","unstructured":"Gilhar A, Etzioni A, Paus R. Alopecia areata. N Engl J Med 2012; 366: 1515\u20131525.","DOI":"10.1056\/NEJMra1103442"},{"key":"117628","doi-asserted-by":"crossref","unstructured":"Aldhouse NVJ, Kitchen H, Knight S, Macey J, Nunes FP, Dutronc Y, et al. \u201c\u2018You lose your hair, what\u2019s the big deal?\u2019 I was so embarrassed, I was so self-conscious, I was so depressed:\u201d a qualitative interview study to understand the psychosocial burden of alopecia areata. J Patient Rep Outcomes 2020; 4: 76.","DOI":"10.1186\/s41687-020-00240-7"},{"key":"117629","doi-asserted-by":"crossref","unstructured":"Rencz F, Gulacsi L, Pentek M, Wikonkal N, Baji P, Brodszky V. Alopecia areata and health-related quality of life: a systematic review and meta-analysis. Br J Dermatol 2016; 175: 561\u2013571.","DOI":"10.1111\/bjd.14497"},{"key":"117630","doi-asserted-by":"crossref","unstructured":"King BA, Senna MM, Ohyama M, Tosti A, Sinclair RD, Ball S, et al. Defining severity in alopecia areata: current perspectives and a multidimensional framework. Dermatol Ther (Heidelb) 2022; 12: 825\u2013834.","DOI":"10.1007\/s13555-022-00711-3"},{"key":"117631","doi-asserted-by":"crossref","unstructured":"Rees H, Wall D, Bokhari L, Asfour L, Sinclair R. Reliability and validity of a measure to assess the health-related quality of life of women with alopecia areata. Clin Exp Dermatol 2023; 48: 681\u2013684.","DOI":"10.1093\/ced\/llad066"},{"key":"117632","doi-asserted-by":"crossref","unstructured":"Frolunde AS, Gren ST, Frostrup AG, Poulsen PB, Vastrup AS, Vestergaard C. Outreach through Facebook: do patients with atopic dermatitis provide clinically relevant information when recruited for surveys on social media? JMIR Dermatol 2023; 6: e45226.","DOI":"10.2196\/45226"},{"key":"117633","unstructured":"Danish legislation, Komiteloven Chapter 4, paragraph 14 [accessed May 15, 2025]. Available from: https:\/\/danskelove.dk\/komit%C3%A9loven"},{"key":"117634","unstructured":"Norwegian Ethical Committee guidelines [accessed May 15, 2025]. Available from: https:\/\/rekportalen.no\/#hjem\/s%C3%B8ke_REK"},{"key":"117635","doi-asserted-by":"crossref","unstructured":"Olsen EA, Hordinsky MK, Price VH, Roberts JL, Shapiro J, Canfield D, et al. Alopecia areata investigational assessment guidelines \u2013 part ii. National alopecia areata foundation. J Am Acad Dermatol 2004; 51: 440\u2013447.","DOI":"10.1016\/j.jaad.2003.09.032"},{"key":"117636","doi-asserted-by":"crossref","unstructured":"Lee JY, Lee JW, Lee WS. Comparison of self-estimated and clinician-measured SALT score in patients with alopecia areata: patients with alopecia areata perceive themselves as more severe than dermatologists. Indian J Dermatol Venereol Leprol 2024; 90: 235\u2013237.","DOI":"10.25259\/IJDVL_439_2022"},{"key":"117637","doi-asserted-by":"crossref","unstructured":"Basra MKA, Fenech R, Gatt RM, Salek MS, Finlay AY. The Dermatology Life Quality Index 1994\u20132007: a comprehensive review of validation data and clinical results. Br J Dermatol 2008; 159: 997\u20131035.","DOI":"10.1111\/j.1365-2133.2008.08832.x"},{"key":"117638","doi-asserted-by":"crossref","unstructured":"Nicolescu AC, Ionescu MA, Constantin MM, Ancuta I, Ionescu S, Niculet E, et al. Psoriasis management challenges regarding difficult-to-treat areas: therapeutic decision and effectiveness. Life (Basel) 2022; 12: 2050.","DOI":"10.3390\/life12122050"},{"key":"117639","doi-asserted-by":"crossref","unstructured":"Ezzedine K, Shourick J, Bergqvist C, Misery L, Chuberre B, Kerob D, et al. Patient Unique Stigmatization Holistic tool in dermatology (PUSH-D): development and validation of a dermatology-specific stigmatization assessment tool. J Eur Acad Dermatol Venereol 2023; 37: 443\u2013450.","DOI":"10.1111\/jdv.18641"},{"key":"117640","unstructured":"Simonsen S, Stausholm KR, Pallesen K, Sedeh FB, Skov L. Danish guidelines for treatment of alopecia areata. Dansk Dermatologisk Selskab. Version July 2023."},{"key":"117641","doi-asserted-by":"crossref","unstructured":"Harries M, Ascott A, Asfour L, Farrant P, Hale G, Holmes S, et al. British Association of Dermatologists living guideline for managing people with alopecia areata 2024. Br J Dermatol 2025; 192: 190\u2013205.","DOI":"10.1093\/bjd\/ljae385"},{"key":"117642","doi-asserted-by":"crossref","unstructured":"Hanson KA, Marwaha S, Kurosky SK, Harries M, Anderson P, Piercy J et al. An evaluation of generic and disease-specific patient-reported outcome measures to assess the impact of percentage of scalp hair loss on health-related quality of life in a European population. JEADV Clin Pract 2025; 4: 451\u2013457.","DOI":"10.1002\/jvc2.591"},{"key":"117643","doi-asserted-by":"crossref","unstructured":"Chernyshov PV, Tomas-Aragones T, Finlay AY, Manolache L, Marron SE, Sampogna S, et al. 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. J Eur Acad Dermatol Venereol 2021; 35: 1614\u20131621.","DOI":"10.1111\/jdv.17370"},{"key":"117644","doi-asserted-by":"crossref","unstructured":"Muntyanu A, Gabrielli S, Donovan J, Gooderham M, Guenther L, Hanna S et al. The burden of alopecia areata: a scoping review focusing on quality of life, mental health and work productivity. J Eur Acad Dermatol Venereol 2023; 37: 1490\u20131520.","DOI":"10.1111\/jdv.18926"}],"container-title":["Acta Dermato-Venereologica"],"original-title":[],"link":[{"URL":"https:\/\/medicaljournalssweden.se\/actadv\/article\/download\/43318\/50766","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/medicaljournalssweden.se\/actadv\/article\/download\/43318\/50766","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,7,19]],"date-time":"2025-07-19T10:40:56Z","timestamp":1752921656000},"score":1,"resource":{"primary":{"URL":"https:\/\/medicaljournalssweden.se\/actadv\/article\/view\/43318"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,7,19]]},"references-count":19,"URL":"https:\/\/doi.org\/10.2340\/actadv.v105.43318","relation":{},"ISSN":["1651-2057","0001-5555"],"issn-type":[{"value":"1651-2057","type":"electronic"},{"value":"0001-5555","type":"print"}],"subject":[],"published":{"date-parts":[[2025,7,19]]}}}