{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,3]],"date-time":"2026-10-03T22:08:45Z","timestamp":1791065325596,"version":"4.1.0"},"reference-count":24,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2022,5,9]],"date-time":"2022-05-09T00:00:00Z","timestamp":1652054400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100004336","name":"Novartis","doi-asserted-by":"publisher","award":["0000"],"award-info":[{"award-number":["0000"]}],"id":[{"id":"10.13039\/100004336","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004336","name":"Novartis","doi-asserted-by":"publisher","award":["GPP3"],"award-info":[{"award-number":["GPP3"]}],"id":[{"id":"10.13039\/100004336","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acad Dermatol Venereol"],"published-print":{"date-parts":[[2022,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Hidradenitis suppurativa (HS) is a chronic, inflammatory, debilitating skin disease characterized by painful deep lesions and associated with substantial disease burden.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>The objective of this study was to describe physician\u2010 and patient\u2010reported clinical unmet needs from a real\u2010world perspective.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This study used data from the Adelphi HS Disease Specific Programme, a point\u2010in\u2010time survey of dermatologists and their patients with HS in Europe and the United States. Dermatologists completed patient record forms (PRFs) for 5\u20137 consecutively consulting patients with HS; patients or carers of patients also optionally completed a patient\/carer self\u2010completion questionnaire (PSC\/CSC). Data collection included demographics, symptomatology and impact on quality of life (QoL).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Dermatologists (<jats:italic>N<\/jats:italic>\u2009=\u2009312) completed PRFs for 1787 patients with HS; patient\u2010 and carer\u2010reported questionnaires (PSC\/CSC) were completed for 33.1% (591\/1787) of patients. The mean age was 34.4\u2009\u00b1\u200912.2\u2009years and 57.6% of patients were female (1029\/1787). Physician\u2010judged disease severity at sampling was categorized as mild in 66.0% (1179\/1787), moderate in 29.3% (523\/1787) and severe in 4.7% (85\/1787) of patients. Deterioration or unstable condition over the previous 12\u2009months was described by 17.1% [235\/1372] and 12.6% [41\/325] of physician\u2010 and patient\/carer\u2010reported cases, respectively. Despite receiving treatment, high proportions of patients still experienced symptoms at sampling (general pain\/discomfort [49.5%, 885\/1787]; inflammation\/redness of lesions\/abscesses [46.1%, 823\/1787] and itching [29.9%, 535\/1787]); these symptoms were more frequent in patients with moderate or severe disease. Patients reported a mean Dermatology Life Quality Index score of 5.9\u2009\u00b1\u20095.4 (555\/591; mild, 4.1\u2009\u00b1\u20094.3; moderate, 9.4\u2009\u00b1\u20095.4; severe, 13.3\u2009\u00b1\u20095.5) and a mean Hidradenitis Suppurativa Quality of Life score of 11.0\u2009\u00b1\u200910.6 (518\/591; mild, 7.6\u2009\u00b1\u20098.3; moderate, 17.7\u2009\u00b1\u200910.0; severe, 31.0\u2009\u00b1\u200915.4) indicating a substantial impact on QoL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Patients with HS experienced a high disease burden despite being actively treated by a dermatologist. This study demonstrates that the burden of HS disease is generally poorly managed with a considerable impact observed on patients' QoL.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jdv.18163","type":"journal-article","created":{"date-parts":[[2022,4,21]],"date-time":"2022-04-21T08:28:23Z","timestamp":1650529703000},"page":"1597-1605","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":49,"title":["Unmet clinical needs and burden of disease in hidradenitis suppurativa: real\u2010world experience from EU5 and US"],"prefix":"10.1111","volume":"36","author":[{"given":"J.R.","family":"Ingram","sequence":"first","affiliation":[{"name":"Division of Infection and Immunity, Department of Dermatology &amp; Academic Wound Healing Cardiff University  Cardiff 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and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1378-1590","authenticated-orcid":false,"given":"A.","family":"Martorell","sequence":"additional","affiliation":[{"name":"Department of Dermatology Hospital de Manises  Valencia Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.P.","family":"Villani","sequence":"additional","affiliation":[{"name":"Department of Dermatology \u2013 Edouard Herriot Hospital, Hospices Civils de Lyon Claude Bernard Lyon I University  Lyon France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H.","family":"Wallinger","sequence":"additional","affiliation":[{"name":"Adelphi Real World  Bollington UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E.","family":"Coak","sequence":"additional","affiliation":[{"name":"Adelphi Real World  Bollington 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