{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,24]],"date-time":"2026-07-24T05:01:24Z","timestamp":1784869284632,"version":"3.55.0"},"reference-count":22,"publisher":"MDPI AG","issue":"14","license":[{"start":{"date-parts":[[2026,7,22]],"date-time":"2026-07-22T00:00:00Z","timestamp":1784678400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100031645","name":"Novartis Farma SpA","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100031645","id-type":"DOI","asserted-by":"crossref"}]},{"name":"Health Publishing and Services srl"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J. Clin. Med.","JCM"],"abstract":"<jats:p>Background\/Objectives: Hidradenitis suppurativa (HS), a chronic, inflammatory skin condition, severely affects quality of life. Despite advances in understanding its pathophysiology, major gaps persist in diagnosis and management. This study examined the journeys and unmet needs of Italian participants via an online survey, focusing on diagnostic delays, treatments, and quality of life for HS. Methods: Data were collected through a survey shared by the HS patient association in a dedicated Facebook group, using 45 closed-ended questions through Computer-Assisted Web Interviews. A total of 320 participants completed the survey in January 2023. Results: Participants reported consultations with approximately five clinicians before receiving a formal diagnosis, with a 10-year delay. Dissatisfaction with primary care was high (73%). Dermatologists played a central role in disease management. Only 24% of participants were on biologic therapy, despite the higher satisfaction levels compared to other treatments. HS was associated with quality-of-life impairments, particularly in psychological wellbeing (58%), daily functioning, and economic productivity. Unmet needs included better psychological support, improved access to biologics, nutritional guidance, and increased awareness of the disease among healthcare professionals. Conclusions: HS imposes considerable physical, psychological, and economic burdens. Earlier diagnosis, improved treatment strategies, and enhanced patient-centered care are essential to reducing this burden.<\/jats:p>","DOI":"10.3390\/jcm15145735","type":"journal-article","created":{"date-parts":[[2026,7,22]],"date-time":"2026-07-22T09:20:39Z","timestamp":1784712039000},"page":"5735","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patient Journey and Unmet Needs in Hidradenitis Suppurativa: Insights from an Italian Survey"],"prefix":"10.3390","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2760-4600","authenticated-orcid":false,"given":"Vincenzo","family":"Bettoli","sequence":"first","affiliation":[{"name":"Acne and Hidradenitis Suppurativa Clinic, O.U. Dermatology, Azienda Ospedaliero, University of Ferrara, 44124 Ferrara, Italy"},{"name":"Acne and Related Disorders Centre, 40125 Bologna, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alberto Maria","family":"Bertoldi","sequence":"additional","affiliation":[{"name":"Ospedale di Venezia e Mestre, 30122 Venezia, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Massimo","family":"Donini","sequence":"additional","affiliation":[{"name":"Ospedale di Venezia e Mestre, 30122 Venezia, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6693-766X","authenticated-orcid":false,"given":"Natale","family":"Schettini","sequence":"additional","affiliation":[{"name":"Acne and Hidradenitis Suppurativa Clinic, O.U. Dermatology, Azienda Ospedaliero, University of Ferrara, 44124 Ferrara, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eleonora","family":"Adamo","sequence":"additional","affiliation":[{"name":"Novartis Farma SpA, 20154 Milano, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lucia","family":"Casoli","sequence":"additional","affiliation":[{"name":"Novartis Farma SpA, 20154 Milano, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alice","family":"Messi","sequence":"additional","affiliation":[{"name":"Novartis Farma SpA, 20154 Milano, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arianna","family":"Tonelli","sequence":"additional","affiliation":[{"name":"Novartis Farma SpA, 20154 Milano, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-3268-0876","authenticated-orcid":false,"given":"Diletta","family":"Valsecchi","sequence":"additional","affiliation":[{"name":"Novartis Farma SpA, 20154 Milano, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Giuseppina","family":"Pintori","sequence":"additional","affiliation":[{"name":"Passion People, 40100 Bologna, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2026,7,22]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"2555","DOI":"10.1007\/s00403-023-02645-y","article-title":"Assessing unmet needs in patients with hidradenitis suppurativa","volume":"315","author":"Chadha","year":"2023","journal-title":"Arch. Dermatol. Res."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"487","DOI":"10.1159\/000517412","article-title":"Hidradenitis Suppurativa in a Large Cohort of Italian Patients: Evalua tion of the Burden of Disease","volume":"238","author":"Fabbrocini","year":"2022","journal-title":"Dermatology"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"18","DOI":"10.1038\/s41572-020-0149-1","article-title":"Hidradenitis suppurativa","volume":"6","author":"Sabat","year":"2020","journal-title":"Nat. Rev. Dis. Primers"},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"471","DOI":"10.1016\/j.det.2023.02.001","article-title":"Hidradenitis Suppurativa","volume":"41","author":"Jenkins","year":"2023","journal-title":"Dermatol. Clin."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"473","DOI":"10.1007\/s00403-022-02374-8","article-title":"Quality of life in patients with early- and late-onset hidradenitis su ppurativa","volume":"315","author":"Sampogna","year":"2023","journal-title":"Arch. Dermatol. Res."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"105","DOI":"10.36849\/JDD.7624","article-title":"A New Tool to Improve Communication Between Hidradenitis Suppurativa P atients and Health Care Providers","volume":"23","author":"Zundell","year":"2024","journal-title":"J. Drugs Dermatol. JDD"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"939","DOI":"10.1001\/jamadermatol.2019.0759","article-title":"Depression and Anxiety in Adults With Hidradenitis Suppurativa: A Systematic Review and Meta-analysis","volume":"155","author":"Machado","year":"2019","journal-title":"JAMA Dermatol."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"1045","DOI":"10.1016\/j.jaad.2019.08.090","article-title":"Hidradenitis suppurativa: Epidemiology, clinical presentation, and pat hogenesis","volume":"82","author":"Goldburg","year":"2020","journal-title":"J. Am. Acad. Dermatol."},{"key":"ref_9","first-page":"e449","article-title":"Hidradenitis suppurativa: Pathogenesis, clinical presentation, epidemi ology, and comorbid associations","volume":"60","author":"Ahmed","year":"2021","journal-title":"Int. J. Dermatol."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"899","DOI":"10.1111\/jdv.20472","article-title":"European S2k guidelines for hidradenitis suppurativa\/acne inversa part 2: Treatment","volume":"39","author":"Zouboulis","year":"2024","journal-title":"J. Eur. Acad. Dermatol. Venereol. JEADV"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"259","DOI":"10.1007\/s00403-024-03121-x","article-title":"The use of biologics and JAK inhibitors in the management of moderate to severe Hidradenitis Suppurativa treatment: A scoping review","volume":"316","author":"Guermazi","year":"2024","journal-title":"Arch. Dermatol. Res."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"127","DOI":"10.1093\/bjd\/ljad367","article-title":"A survey-based study on experiences with and perspectives toward medic al providers among patients with hidradenitis suppurativa","volume":"190","author":"Marquez","year":"2023","journal-title":"Br. J. Dermatol."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"1597","DOI":"10.1111\/jdv.18163","article-title":"Unmet clinical needs and burden of disease in hidradenitis suppurativa: Real-world experience from EU5 and US","volume":"36","author":"Ingram","year":"2022","journal-title":"J. Eur. Acad. Dermatol. Venereol. JEADV"},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"366","DOI":"10.1016\/j.jaad.2019.06.1301","article-title":"Evaluating patients\u2019 unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project","volume":"82","author":"Garg","year":"2020","journal-title":"J. Am. Acad. Dermatol."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"369","DOI":"10.1159\/000536389","article-title":"The Global Hidradenitis Suppurativa Atlas Methodology: Combining Globa l Proportions in a Pooled Analysis","volume":"240","author":"Bouazzi","year":"2024","journal-title":"Dermatology"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"421","DOI":"10.1159\/000508787","article-title":"Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patien ts and Healthcare System","volume":"236","author":"Kokolakis","year":"2020","journal-title":"Dermatology"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"1104","DOI":"10.1159\/000524226","article-title":"Recommendations to Optimize Patient Care in Hidradenitis Suppurativa C linics: Our Experience","volume":"238","author":"Rehman","year":"2022","journal-title":"Dermatology"},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1016\/j.jdin.2022.08.024","article-title":"Patient perspectives on diagnosis and management of hidradenitis suppu rativa: A web-based survey","volume":"9","author":"Hsiao","year":"2022","journal-title":"JAAD Int."},{"key":"ref_19","doi-asserted-by":"crossref","unstructured":"Mpakogiannis, K., Fousekis, F.S., Karampinis, E., Mastoridou, E., Gaitanis, G., and Katsanos, K.H. (2025). Unravelling the Link Between Hidradenitis Suppurativa and Inflammatory Bowel Disease: A Literature Review. Biomedicines, 13.","DOI":"10.3390\/biomedicines13081833"},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1016\/j.det.2024.12.003","article-title":"Comorbidities and Quality of Life in Hidradenitis Suppurativa","volume":"43","author":"Midgette","year":"2025","journal-title":"Dermatol. Clin."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"814","DOI":"10.1111\/bjd.20954","article-title":"New insights in hidradenitis suppurativa from a population-based Dutch cohort: Prevalence, smoking behaviour, socioeconomic status and comorbidities","volume":"186","author":"Prens","year":"2022","journal-title":"Br. J. Dermatol."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"122","DOI":"10.1093\/bjd\/ljac027","article-title":"The impact of hidradenitis suppurativa on professional life","volume":"188","author":"Kalus","year":"2023","journal-title":"Br. J. Dermatol."}],"container-title":["Journal of Clinical Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2077-0383\/15\/14\/5735\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,24]],"date-time":"2026-07-24T04:15:38Z","timestamp":1784866538000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2077-0383\/15\/14\/5735"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,22]]},"references-count":22,"journal-issue":{"issue":"14","published-online":{"date-parts":[[2026,7]]}},"alternative-id":["jcm15145735"],"URL":"https:\/\/doi.org\/10.3390\/jcm15145735","relation":{},"ISSN":["2077-0383"],"issn-type":[{"value":"2077-0383","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,22]]}}}