{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T22:29:06Z","timestamp":1787956146390,"version":"build-2784847793"},"reference-count":27,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,10,8]],"date-time":"2022-10-08T00:00:00Z","timestamp":1665187200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100012633","name":"Royal North Shore Hospital","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100012633","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Aust J Dermatology"],"published-print":{"date-parts":[[2022,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>To identify reasons for ongoing poor quality of life (pQOL) in a subset of long\u2010term topical corticosteroid\u2010treated vulval lichen sclerosus (VLS) patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A prospective cross\u2010sectional study of patients attending a dermato\u2010gynaecology practice in Sydney, Australia, comparing VLS patients with good quality of life (gQOL) and pQOL, in pre\u2010treatment and long\u2010term treatment groups, using the Vulval Quality of Life Index (VQLI). Demographics, VQLI scores and treatment characteristics were compared between gQOL and pQOL patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 255 biopsy\u2010proven VLS patients, 67 in pre\u2010treatment and 188 in long\u2010term treated groups were considered. There were 33 (49.3%) pQOL patients in pre\u2010treatment and 13 (6.9%) in treatment groups (<jats:italic>p<\/jats:italic>\u00a0&lt;\u20090.001). The highest\u2010scoring domain in treated pQOL patients was sexuality (1.7 [interquartile range (IQR) 1.0\u20132.0]), followed by anxiety [1.3 (IQR 1.0\u20131.5]), symptoms (1.0 [IQR 0.5\u20131.5]) and activities of daily living (0.7 [IQR 0.3\u20131.0]). Compared to treated gQOL, treated pQOL had significantly higher proportions of patients with partial treatment adherence (8 [61.5%] vs 42 [24.0%], <jats:italic>p<\/jats:italic>\u00a0=\u20090.006), suboptimal disease control (7 [53.8%] vs 20 [11.4%], <jats:italic>p<\/jats:italic>\u00a0&lt;\u20090.001), scarring progression (3 [23.1%] vs 7 [4.0%], <jats:italic>p<\/jats:italic>\u00a0=\u20090.024) and urinary incontinence (5 [38.5%] vs 27 [15.4%], <jats:italic>p<\/jats:italic>\u00a0=\u20090.049).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Only a minority of long\u2010term treated VLS patients reported ongoing pQOL. Of those who did, sexuality and anxiety domains were found to be the main sources of distress. Three major areas distinguishing gQOL from pQOL patients were (1) treatment adherence and disease control, (2) psychological factors and (3) urinary incontinence.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ajd.13926","type":"journal-article","created":{"date-parts":[[2022,10,8]],"date-time":"2022-10-08T13:19:17Z","timestamp":1665235157000},"page":"463-472","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Why do some patients with vulval lichen sclerosus on long\u2010term topical corticosteroid treatment experience ongoing poor quality of life?"],"prefix":"10.1111","volume":"63","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3137-5847","authenticated-orcid":false,"given":"Marlene","family":"Wijaya","sequence":"first","affiliation":[{"name":"Faculty of Medicine, Northern Clinical School University of Sydney  St Leonards New South Wales Australia"},{"name":"Department of Dermatology Royal North Shore Hospital  St Leonards New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9749-6983","authenticated-orcid":false,"given":"Geoffrey","family":"Lee","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, Northern Clinical School University of Sydney  St Leonards New South Wales Australia"},{"name":"Department of Dermatology Royal North Shore Hospital  St Leonards New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gayle","family":"Fischer","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, Northern Clinical School University of Sydney  St Leonards New South Wales Australia"},{"name":"Department of Dermatology Royal North Shore Hospital  St Leonards New South Wales Australia"},{"name":"North Shore Private Hospital  St Leonards New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,10,8]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.12137"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/ajd.13530"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1158\/1055\u20109965.EPI\u201016\u20100019"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamadermatol.2015.0643"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40257\u2010018\u20100364\u20107"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1097\/LGT.0000000000000599"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamadermatol.2020.1074"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ygyno.2020.02.020"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.140.6.709"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.12273"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.3109\/01443615.2015.1049252"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.15125"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1067\/mob.2003.395"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1743\u20106109.2010.02077.x"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/ajd.13235"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.15086"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/ajd.12339"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1440\u20100960.2010.00636.x"},{"key":"e_1_2_11_20_1","first-page":"335","article-title":"General practitioners' knowledge about use of topical corticosteroids in paediatric atopic dermatitis in Australia","volume":"46","author":"Smith S","year":"2017","journal-title":"Aust Fam Physician"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1177\/1077727x7400300201"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1745\u20107599.2012.00715.x"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.3109\/0167482X.2010.507890"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1089\/jwh.2014.4805"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1097\/lgt.0000000000000481"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1080\/0167482x.2020.1857359"},{"key":"e_1_2_11_27_1","unstructured":"World Health Organization.Sexual Health.2006.https:\/\/www.who.int\/. Accessed 26 July 2021."},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.maturitas.2020.09.005"}],"container-title":["Australasian Journal of Dermatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ajd.13926","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/ajd.13926","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ajd.13926","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,21]],"date-time":"2023-08-21T17:14:16Z","timestamp":1692638056000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/ajd.13926"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,10,8]]},"references-count":27,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2022,11]]}},"alternative-id":["10.1111\/ajd.13926"],"URL":"https:\/\/doi.org\/10.1111\/ajd.13926","archive":["Portico"],"relation":{},"ISSN":["0004-8380","1440-0960"],"issn-type":[{"value":"0004-8380","type":"print"},{"value":"1440-0960","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,10,8]]},"assertion":[{"value":"2022-03-06","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-08-28","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-10-08","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}