{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T11:50:50Z","timestamp":1791633050603,"version":"4.3.4"},"reference-count":98,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T00:00:00Z","timestamp":1791590400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T00:00:00Z","timestamp":1791590400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acad Dermatol Venereol"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Hidradenitis suppurativa (HS) is a chronic, inflammatory skin disease with profound impact on quality of life. Increasing recognition of the patient's role as an active partner in their own care has transformed approaches to disease management, yet a conceptual framework for partnerships with people with HS remains lacking. To provide a comprehensive review of meaningful partnerships with people with HS across three levels: the individual, the patient community, and collaborative partnerships. For each level, we review existing evidence, illustrate barriers to meaningful involvement, present examples of successful patient involvement, and propose future directions. A narrative review of the literature was conducted. Barriers to partnership and future priorities were identified from both people with HS and clinicians' perspectives. At the individual level, structured communication strategies including teach\u2010back and shared decision\u2010making improve treatment adherence and patient satisfaction. At the community level, online patient networks provide peer support and health information. At the collaborative level, patient involvement in research design contributes to shaping policy and knowledge. Patient partnership in HS operates across multiple levels and requires tailored strategies to be effective. Engaging people with HS as partners is a respectful approach to create impactful, relevant research with the potential to improve outcomes and quality of care. A three\u2010level framework is proposed to guide future implementation.<\/jats:p>","DOI":"10.1111\/jdv.70788","type":"journal-article","created":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T11:40:36Z","timestamp":1791632436000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The future management of\n                    <scp>HS<\/scp>\n                    : People with\n                    <scp>HS<\/scp>\n                    as partners"],"prefix":"10.1111","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7953-1047","authenticated-orcid":false,"given":"Ditte Marie L.","family":"Saunte","sequence":"first","affiliation":[{"name":"Department of Dermatology and Allergy, PHOENIX Research Center Copenhagen University Hospital \u2010 Herlev and Gentofte  Gentofte Denmark"},{"name":"Department of Clinical Medicine, Faculty of Health and Medical Sciences University of Copenhagen  Copenhagen Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4386-0049","authenticated-orcid":false,"given":"Elisabeth M. M.","family":"Christensen","sequence":"additional","affiliation":[{"name":"Department of Dermatology and Allergy, PHOENIX Research Center Copenhagen University Hospital \u2010 Herlev and Gentofte  Gentofte Denmark"},{"name":"Department of Clinical Medicine, Faculty of Health and Medical Sciences University of Copenhagen  Copenhagen Denmark"},{"name":"Department of Dermatology Zealand University Hospital  Roskilde Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Athena","family":"Gierbolini","sequence":"additional","affiliation":[{"name":"Hope for HS  Troy Michigan USA"},{"name":"The HS Foundation  Cary North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6995-7714","authenticated-orcid":false,"given":"Barry M.","family":"McGrath","sequence":"additional","affiliation":[{"name":"HS Ireland Hidradenitis Suppurativa Association  County Clare Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0534-2854","authenticated-orcid":false,"given":"Lauren A. V.","family":"Orenstein","sequence":"additional","affiliation":[{"name":"Department of Dermatology Emory University School of Medicine  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5176-2166","authenticated-orcid":false,"given":"Bente","family":"Villumsen","sequence":"additional","affiliation":[{"name":"Danish HS Patients' Association  Soborg Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0712-2540","authenticated-orcid":false,"given":"Gregor B. E.","family":"Jemec","sequence":"additional","affiliation":[{"name":"Department of Dermatology and Allergy, PHOENIX Research Center Copenhagen University Hospital \u2010 Herlev and Gentofte  Gentofte Denmark"},{"name":"Department of Clinical Medicine, Faculty of Health and Medical Sciences University of Copenhagen  Copenhagen Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,10,10]]},"reference":[{"issue":"5","key":"e_1_2_18_2_1","doi-asserted-by":"crossref","first-page":"510","DOI":"10.1001\/jamadermatol.2023.0486","article-title":"Patient perspectives of health system barriers to accessing care for hidradenitis suppurativa: a qualitative study","volume":"159","author":"Barnes LA","year":"2023","journal-title":"JAMA Dermatol"},{"issue":"10476","key":"e_1_2_18_3_1","doi-asserted-by":"crossref","first-page":"420","DOI":"10.1016\/S0140-6736(24)02475-9","article-title":"Hidradenitis suppurativa","volume":"405","author":"Sabat R","year":"2025","journal-title":"Lancet"},{"issue":"2","key":"e_1_2_18_4_1","doi-asserted-by":"crossref","first-page":"149","DOI":"10.1159\/000542343","article-title":"Treatment satisfaction in patients with hidradenitis suppurativa: a real\u2010world survey from the EU5 and USA","volume":"241","author":"Ingram JR","year":"2025","journal-title":"Dermatology"},{"issue":"4","key":"e_1_2_18_5_1","doi-asserted-by":"crossref","first-page":"462","DOI":"10.1016\/j.clindermatol.2025.05.007","article-title":"The psychosocial effects of hidradenitis suppurativa","volume":"43","author":"Durinec P","year":"2025","journal-title":"Clin Dermatol"},{"issue":"5","key":"e_1_2_18_6_1","first-page":"575","article-title":"Enhancing patient outcomes in hidradenitis suppurativa: the interplay of health literacy and online resource quality","volume":"241","author":"Karamitros G","year":"2025","journal-title":"Dermatology"},{"issue":"2","key":"e_1_2_18_7_1","doi-asserted-by":"crossref","first-page":"184","DOI":"10.1159\/000543286","article-title":"Exploring health literacy among adults with hidradenitis suppurativa","volume":"241","author":"Koerts NDK","year":"2025","journal-title":"Dermatology"},{"issue":"6","key":"e_1_2_18_8_1","first-page":"284","article-title":"Use and effectiveness of the teach\u2010back method in patient education and health outcomes","volume":"36","author":"Yen PH","year":"2019","journal-title":"Fed Pract"},{"issue":"1","key":"e_1_2_18_9_1","doi-asserted-by":"crossref","first-page":"210","DOI":"10.11124\/jbisrir-2016-2296","article-title":"The effectiveness of the teach\u2010back method on adherence and self\u2010management in health education for people with chronic disease: a systematic review","volume":"14","author":"Ha Dinh TT","year":"2016","journal-title":"JBI Database System Rev Implement Rep"},{"issue":"4","key":"e_1_2_18_10_1","doi-asserted-by":"crossref","DOI":"10.3399\/bjgpopen19X101672","article-title":"Patients' utilisation and perception of the quality of printed health education materials in primary health care: a cross\u2010sectional study","volume":"3","author":"Haji A","year":"2019","journal-title":"BJGP Open"},{"issue":"6","key":"e_1_2_18_11_1","doi-asserted-by":"crossref","first-page":"e171","DOI":"10.1111\/bjd.16603","article-title":"Profound consequences of hidradenitis suppurativa: a review","volume":"183","author":"Matusiak L","year":"2020","journal-title":"Br J Dermatol"},{"issue":"1","key":"e_1_2_18_12_1","doi-asserted-by":"crossref","first-page":"41","DOI":"10.1093\/bjd\/ljac018","article-title":"Pain experiences among those living with hidradenitis suppurativa: a qualitative study","volume":"188","author":"Orenstein LAV","year":"2023","journal-title":"Br J Dermatol"},{"issue":"2","key":"e_1_2_18_13_1","doi-asserted-by":"crossref","first-page":"191","DOI":"10.2340\/00015555-2815","article-title":"Clinical characteristics of pruritus and pain in patients with hidradenitis Suppurativa","volume":"98","author":"Matusiak L","year":"2018","journal-title":"Acta Derm Venereol"},{"issue":"2","key":"e_1_2_18_14_1","doi-asserted-by":"crossref","first-page":"366","DOI":"10.1016\/j.jaad.2019.06.1301","article-title":"Evaluating patients' unmet needs in hidradenitis suppurativa: results from the Global Survey of Impact and Healthcare Needs (VOICE) project","volume":"82","author":"Garg A","year":"2020","journal-title":"J Am Acad Dermatol"},{"issue":"13","key":"e_1_2_18_15_1","doi-asserted-by":"crossref","first-page":"6709","DOI":"10.3390\/ijerph18136709","article-title":"The burden of hidradenitis suppurativa signs and symptoms in quality of life: systematic review and meta\u2010analysis","volume":"18","author":"Montero\u2010Vilchez T","year":"2021","journal-title":"Int J Environ Res Public Health"},{"key":"e_1_2_18_16_1","doi-asserted-by":"crossref","DOI":"10.2340\/actadv.v106.adv-2025-0179","article-title":"Exploring the impact of fatigue and sleep disturbance in hidradenitis suppurativa: perspectives from patients and healthcare professionals","volume":"106","author":"McGrath BM","year":"2026","journal-title":"Acta Derm Venereol"},{"issue":"4","key":"e_1_2_18_17_1","doi-asserted-by":"crossref","first-page":"432","DOI":"10.1001\/jamadermatol.2022.0248","article-title":"Associations of internalized skin bias with age, adverse psychopathology, and health\u2010related quality of life among patients with hidradenitis suppurativa: a cross\u2010sectional analysis","volume":"158","author":"Butt M","year":"2022","journal-title":"JAMA Dermatol"},{"issue":"1","key":"e_1_2_18_18_1","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":"Schneider\u2010Burrus S","year":"2023","journal-title":"Br J Dermatol"},{"issue":"5","key":"e_1_2_18_19_1","doi-asserted-by":"crossref","first-page":"421","DOI":"10.1159\/000508787","article-title":"Delayed diagnosis of hidradenitis suppurativa and its effect on patients and healthcare system","volume":"236","author":"Kokolakis G","year":"2020","journal-title":"Dermatology"},{"issue":"1","key":"e_1_2_18_20_1","doi-asserted-by":"crossref","DOI":"10.1080\/09546634.2024.2376268","article-title":"The development and initial evaluation of conversation cards for optimizing consultations for patients with atopic dermatitis","volume":"35","author":"Krontoft ASB","year":"2024","journal-title":"J Dermatolog Treat"},{"issue":"9650","key":"e_1_2_18_21_1","doi-asserted-by":"crossref","first-page":"1661","DOI":"10.1016\/S0140-6736(08)61690-6","article-title":"Closing the gap in a generation: health equity through action on the social determinants of health","volume":"372","author":"Marmot M","year":"2008","journal-title":"Lancet"},{"issue":"1","key":"e_1_2_18_22_1","doi-asserted-by":"crossref","first-page":"85","DOI":"10.1093\/bjd\/ljaf046","article-title":"A qualitative interview study exploring patients' views and experiences of treatment for hidradenitis suppurativa in the UK","volume":"193","author":"Howells L","year":"2025","journal-title":"Br J Dermatol"},{"issue":"2","key":"e_1_2_18_23_1","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1001\/jamadermatol.2023.5425","article-title":"Factors affecting treatment selection among patients with hidradenitis suppurativa","volume":"160","author":"Salame N","year":"2024","journal-title":"JAMA Dermatol"},{"issue":"1","key":"e_1_2_18_24_1","doi-asserted-by":"crossref","first-page":"687","DOI":"10.1007\/s00403-025-04121-1","article-title":"Empathy, expertise, and expeditious communication: identifying how people with hidradenitis suppurativa experience outpatient palliative care","volume":"317","author":"Soltoff A","year":"2025","journal-title":"Arch Dermatol Res"},{"key":"e_1_2_18_25_1","doi-asserted-by":"crossref","DOI":"10.3389\/fmed.2025.1626345","article-title":"Patient involvement in treatment decisions is associated with increased therapy satisfaction in hidradenitis suppurativa","volume":"12","author":"Cugno G","year":"2025","journal-title":"Front Med (Lausanne)"},{"issue":"2","key":"e_1_2_18_26_1","doi-asserted-by":"crossref","first-page":"190","DOI":"10.1016\/j.jdin.2020.09.001","article-title":"Impact of a hidradenitis suppurativa patient decision aid on treatment decision making: a randomized controlled trial","volume":"1","author":"McLean D","year":"2020","journal-title":"JAAD Int"},{"key":"e_1_2_18_27_1","doi-asserted-by":"crossref","first-page":"58","DOI":"10.1016\/j.ajem.2024.01.048","article-title":"Differentiating hidradenitis suppurativa flare from infection in the emergency department and recommendations for transitioning care to the outpatient setting","volume":"79","author":"Reddy S","year":"2024","journal-title":"Am J Emerg Med"},{"issue":"3","key":"e_1_2_18_28_1","doi-asserted-by":"crossref","DOI":"10.1097\/JW9.0000000000000096","article-title":"Wound care counseling of patients with hidradenitis suppurativa: perspectives of dermatologists","volume":"9","author":"Poondru S","year":"2023","journal-title":"Int J Womens Dermatol"},{"issue":"3","key":"e_1_2_18_29_1","doi-asserted-by":"crossref","first-page":"224","DOI":"10.1159\/000536094","article-title":"Expert practices in hidradenitis suppurativa flare management: a cross\u2010sectional survey study","volume":"10","author":"Masson R","year":"2024","journal-title":"Skin Appendage Disord"},{"issue":"1","key":"e_1_2_18_30_1","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1111\/bjd.19412","article-title":"Characterizing physical symptoms of flare in hidradenitis suppurativa: a patient survey","volume":"184","author":"Fernandez JM","year":"2021","journal-title":"Br J Dermatol"},{"issue":"9","key":"e_1_2_18_31_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 SA","year":"2023","journal-title":"Arch Dermatol Res"},{"issue":"6","key":"e_1_2_18_32_1","doi-asserted-by":"crossref","first-page":"1847","DOI":"10.1007\/s00403-023-02576-8","article-title":"Patient perspectives of wound care management in hidradenitis suppurativa","volume":"315","author":"Poondru S","year":"2023","journal-title":"Arch Dermatol Res"},{"issue":"2","key":"e_1_2_18_33_1","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1001\/jamadermatol.2025.5112","article-title":"Health system experiences and care engagement in Latine patients with hidradenitis suppurativa","volume":"162","author":"Hernandez Y","year":"2026","journal-title":"JAMA Dermatol"},{"key":"e_1_2_18_34_1","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1016\/j.jdin.2023.02.005","article-title":"Ambulatory palliative care among patients with hidradenitis suppurativa: a qualitative study","volume":"11","author":"Chu L","year":"2023","journal-title":"JAAD Int"},{"issue":"2","key":"e_1_2_18_35_1","doi-asserted-by":"crossref","first-page":"340","DOI":"10.1111\/bjd.18692","article-title":"The Hidradenitis Suppurativa Quality of Life (HiSQOL) score: development and validation of a measure for clinical trials","volume":"183","author":"Kirby JS","year":"2020","journal-title":"Br J Dermatol"},{"issue":"4","key":"e_1_2_18_36_1","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2022-060815","article-title":"Treatment of Hidradenitis Suppurativa Evaluation Study (THESEUS): protocol for a prospective cohort study","volume":"12","author":"Bates J","year":"2022","journal-title":"BMJ Open"},{"issue":"6","key":"e_1_2_18_37_1","doi-asserted-by":"crossref","first-page":"1422","DOI":"10.1111\/bjd.13163","article-title":"The hidradenitis suppurativa priority setting partnership","volume":"171","author":"Ingram JR","year":"2014","journal-title":"Br J Dermatol"},{"issue":"3","key":"e_1_2_18_38_1","doi-asserted-by":"crossref","first-page":"642","DOI":"10.1111\/bjd.16672","article-title":"A core domain set for hidradenitis suppurativa trial outcomes: an international Delphi process","volume":"179","author":"Thorlacius L","year":"2018","journal-title":"Br J Dermatol"},{"issue":"1","key":"e_1_2_18_39_1","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1111\/exd.14609","article-title":"New treatments and new assessment instruments for hidradenitis suppurativa","volume":"31","author":"Straalen KR","year":"2022","journal-title":"Exp Dermatol"},{"issue":"5","key":"e_1_2_18_40_1","doi-asserted-by":"crossref","first-page":"612","DOI":"10.1177\/2168479017706405","article-title":"Improving patient involvement in medicines research and development: a practical roadmap","volume":"51","author":"Geissler J","year":"2017","journal-title":"Ther Innov Regul Sci"},{"issue":"6","key":"e_1_2_18_41_1","doi-asserted-by":"crossref","first-page":"929","DOI":"10.1177\/2168479015580384","article-title":"Partnering with patients in the development and lifecycle of medicines: a call for action","volume":"49","author":"Hoos A","year":"2015","journal-title":"Ther Innov Regul Sci"},{"issue":"2","key":"e_1_2_18_42_1","doi-asserted-by":"crossref","first-page":"133","DOI":"10.1177\/12034754231156103","article-title":"Top ten research priorities for psoriasis, atopic dermatitis and hidradenitis suppurativa: the SkIN Canada Priority Setting Initiative","volume":"27","author":"Drucker AM","year":"2023","journal-title":"J Cutan Med Surg"},{"key":"e_1_2_18_43_1","volume-title":"Patient\u2010focused drug development: collecting comprehensive and representative input: guidance for industry, Food and Drug Administration staff, and other stakeholders [Internet]","author":"U.S. Food and Drug Administration","year":"2020"},{"key":"e_1_2_18_44_1","volume-title":"Clinical practice guidelines we can trust","author":"IOM (Institute of Medicine)","year":"2011"},{"key":"e_1_2_18_45_1","unstructured":"European Medicines Agency.ICH reflection paper \u2013 proposed ICH guideline work to advance Patient Focused Drug Development (PFDD). [Reflection Paper] EMA\/CHMP\/ICH\/338534\/2021.2021. [cited 2026 May 16]. Available from:https:\/\/www.ema.europa.eu\/en\/news\/path\u2010better\u2010include\u2010patients\u2010perspectives\u2010regulation\u2010medicines."},{"key":"e_1_2_18_46_1","unstructured":"European Medicines Agency.Reflection paper on patient experience data [Draft Reflection paper] EMA\/CHMP\/PRAC\/148869\/2025.2025. [cited 2026 May 16]. Available from:https:\/\/www.ema.europa.eu\/en\/documents\/scientific\u2010guideline\/reflection\u2010paper\u2010patient\u2010experience\u2010data_en.pdf"},{"key":"e_1_2_18_47_1","volume-title":"Developing NICE guidelines: the manual","author":"National Institute for Health and Care Excellence (NICE)","year":"2014"},{"issue":"5","key":"e_1_2_18_48_1","doi-asserted-by":"crossref","first-page":"1009","DOI":"10.1111\/bjd.17537","article-title":"British Association of Dermatologists guidelines for the management of hidradenitis suppurativa (acne inversa) 2018","volume":"180","author":"Ingram JR","year":"2019","journal-title":"Br J Dermatol"},{"issue":"5","key":"e_1_2_18_49_1","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 CC","year":"2025","journal-title":"J Eur Acad Dermatol Venereol"},{"key":"e_1_2_18_50_1","doi-asserted-by":"publisher","DOI":"10.1111\/jdv.70638"},{"issue":"1","key":"e_1_2_18_51_1","doi-asserted-by":"crossref","DOI":"10.1111\/exd.70032","article-title":"13th European Hidradenitis Suppurativa (EHSF) e.V. Conference\u2010imaging future transitions","volume":"34","author":"Zouboulis CC","year":"2025","journal-title":"Exp Dermatol"},{"issue":"6","key":"e_1_2_18_52_1","doi-asserted-by":"crossref","first-page":"2587","DOI":"10.1007\/s13555-026-01769-z","article-title":"Symposium on hidradenitis suppurativa advances 2025 proceedings","volume":"16","author":"Chung CS","year":"2026","journal-title":"Dermatol Ther (Heidelb)"},{"issue":"7","key":"e_1_2_18_53_1","doi-asserted-by":"crossref","first-page":"726","DOI":"10.1111\/ijd.13601","article-title":"Hidradenitis suppurativa gains increasing interest on World Wide Web: a source for patient information?","volume":"56","author":"Hessam S","year":"2017","journal-title":"Int J Dermatol"},{"issue":"2","key":"e_1_2_18_54_1","doi-asserted-by":"crossref","first-page":"228","DOI":"10.1093\/bjd\/ljad104","article-title":"Understanding the real\u2010world patient journey and unmet needs of people with hidradenitis suppurativa through social media research","volume":"189","author":"Kirby JS","year":"2023","journal-title":"Br J Dermatol"},{"issue":"10","key":"e_1_2_18_55_1","doi-asserted-by":"crossref","first-page":"1937","DOI":"10.1093\/ced\/llaf236","article-title":"Evaluating the quality and readability of online information about hidradenitis suppurativa: a systematic review","volume":"50","author":"Aghajani M","year":"2025","journal-title":"Clin Exp Dermatol"},{"issue":"5","key":"e_1_2_18_56_1","doi-asserted-by":"crossref","first-page":"e310","DOI":"10.1111\/ajd.14533","article-title":"Quality and readability of online health resources for hidradenitis suppurativa: a cross\u2010sectional analysis","volume":"66","author":"Xiong G","year":"2025","journal-title":"Australas J Dermatol"},{"issue":"6","key":"e_1_2_18_57_1","doi-asserted-by":"crossref","first-page":"1546","DOI":"10.1111\/bjd.14038","article-title":"Diagnostic delay in hidradenitis suppurativa is a global problem","volume":"173","author":"Saunte DM","year":"2015","journal-title":"Br J Dermatol"},{"issue":"4","key":"e_1_2_18_58_1","doi-asserted-by":"crossref","first-page":"920","DOI":"10.1002\/jvc2.70071","article-title":"Patient perspectives on the impact of living with hidradenitis suppurativa: results from the Global \u2018HS Uncovered\u2019 Burden of Disease Survey","volume":"4","author":"Kokolakis G","year":"2025","journal-title":"JEADV Clin Pract"},{"key":"e_1_2_18_59_1","doi-asserted-by":"crossref","first-page":"adv14732","DOI":"10.2340\/actadv.v104.14732","article-title":"Prevalence and characteristics of hidradenitis suppurativa in the northern Finland Birth Cohort 1986 Study: a cross\u2010sectional study of 2,775 subjects","volume":"104","author":"Sinikumpu SP","year":"2024","journal-title":"Acta Derm Venereol"},{"key":"e_1_2_18_60_1","doi-asserted-by":"publisher","DOI":"10.1111\/ddg.15901"},{"issue":"3","key":"e_1_2_18_61_1","doi-asserted-by":"crossref","first-page":"1739","DOI":"10.1007\/s13555-026-01669-2","article-title":"Economic burden of hidradenitis suppurativa in Spain","volume":"16","author":"Vilarrasa E","year":"2026","journal-title":"Dermatol Ther (Heidelb)"},{"key":"e_1_2_18_62_1","unstructured":"HS Connect Makes History with Times Square's First Patient\u2010Led Runway Show. Featuring models impacted by HS a powerful advocacy message was brought to world's most visible stage. [cited 2026 May 16]. Available from:https:\/\/hsconnect.org\/hs\u2010connect\u2010makes\u2010history\u2010with\u2010times\u2010squares\u2010first\u2010patient\u2010led\u2010runway\u2010show\/."},{"key":"e_1_2_18_63_1","unstructured":"HS TRUTHS.The Naked Truths of HS | No script. No shame (Video). [cited 2026 May 16]. Available from:https:\/\/www.youtube.com\/watch?v=08bI32yKOFo."},{"key":"e_1_2_18_64_1","doi-asserted-by":"crossref","DOI":"10.4135\/9781452244181","volume-title":"Community\u2010based participatory research","author":"Hacker K","year":"2013"},{"key":"e_1_2_18_65_1","unstructured":"RamseyC.Looking at CBPR through the Lens of the IRB.2008. [cited 2026 May 16]. Available from:http:\/\/www.usd.edu\/research\/research\u2010and\u2010sponsored\u2010programs\/upload\/Looking\u2010at\u2010CBPR\u2010Through\u2010the\u2010Lens\u2010of\u2010the\u2010IRB.ppt."},{"key":"e_1_2_18_66_1","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1146\/annurev.publhealth.19.1.173","article-title":"Review of community\u2010based research: assessing partnership approaches to improve public health","volume":"19","author":"Israel BA","year":"1998","journal-title":"Annu Rev Public Health"},{"issue":"1","key":"e_1_2_18_67_1","doi-asserted-by":"crossref","first-page":"135","DOI":"10.1146\/annurev-publhealth-082224-022223","article-title":"Community\u2010based participatory research: evolution and significant developments","volume":"47","author":"Israel BA","year":"2026","journal-title":"Annu Rev Public Health"},{"issue":"3","key":"e_1_2_18_68_1","doi-asserted-by":"crossref","first-page":"319","DOI":"10.1007\/s40257-022-00680-5","article-title":"Patient and public involvement in dermatology research: a review","volume":"23","author":"Heague M","year":"2022","journal-title":"Am J Clin Dermatol"},{"issue":"1","key":"e_1_2_18_69_1","doi-asserted-by":"crossref","DOI":"10.1017\/cts.2025.62","article-title":"Full spectrum town halls for hidradenitis suppurativa: a model for advancing clinician\u2010patient\u2010researcher engagement in clinical and translational research","volume":"9","author":"Hashemi\u2010Arend A","year":"2025","journal-title":"J Clin Transl Sci"},{"issue":"6","key":"e_1_2_18_70_1","doi-asserted-by":"crossref","first-page":"1490","DOI":"10.1111\/bjd.18818","article-title":"Identifying barriers to care and research in hidradenitis suppurativa: findings from a patient engagement event","volume":"182","author":"Shukla N","year":"2020","journal-title":"Br J Dermatol"},{"issue":"2","key":"e_1_2_18_71_1","doi-asserted-by":"crossref","first-page":"221","DOI":"10.1093\/bjd\/ljad108","article-title":"If my hidradenitis had a voice, this is what it would say: the perspective of a young woman with Down syndrome and hidradenitis suppurativa","volume":"189","author":"Sokoloff A","year":"2023","journal-title":"Br J Dermatol"},{"issue":"1","key":"e_1_2_18_72_1","doi-asserted-by":"crossref","DOI":"10.1097\/JW9.0000000000000130","article-title":"Access to dermatologic care and provider impact on hidradenitis suppurativa care: global survey insights","volume":"10","author":"Rinderknecht FB","year":"2024","journal-title":"Int J Womens Dermatol"},{"issue":"2","key":"e_1_2_18_73_1","doi-asserted-by":"crossref","DOI":"10.1002\/ski2.322","article-title":"No\u2010shows to hidradenitis suppurativa clinic visits: patient perspectives","volume":"4","author":"Fragoso NM","year":"2024","journal-title":"Skin Health Dis"},{"issue":"3","key":"e_1_2_18_74_1","doi-asserted-by":"crossref","DOI":"10.1097\/JW9.0000000000000049","article-title":"Communicating with health providers and romantic partners: the impact of negative emotions on quality of life for individuals with hidradenitis suppurativa","volume":"8","author":"Ingraham N","year":"2022","journal-title":"Int J Womens Dermatol"},{"issue":"5","key":"e_1_2_18_75_1","doi-asserted-by":"crossref","first-page":"921","DOI":"10.1111\/bjd.20523","article-title":"Thematic synthesis of the experiences of people with hidradenitis suppurativa: a systematic review","volume":"185","author":"Howells L","year":"2021","journal-title":"Br J Dermatol"},{"issue":"5","key":"e_1_2_18_76_1","doi-asserted-by":"crossref","first-page":"624","DOI":"10.1093\/bjd\/ljad215","article-title":"Healthcare experiences among patients with hidradenitis suppurativa: a qualitative study","volume":"189","author":"Sow Y","year":"2023","journal-title":"Br J Dermatol"},{"issue":"1","key":"e_1_2_18_77_1","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1111\/j.1365-2923.2009.03530.x","article-title":"Active patient involvement in the education of health professionals","volume":"44","author":"Towle A","year":"2010","journal-title":"Med Educ"},{"issue":"1","key":"e_1_2_18_78_1","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1037\/a0022443","article-title":"Changes in coping style and treatment outcome following motor vehicle accident","volume":"56","author":"Hall PA","year":"2011","journal-title":"Rehabil Psychol"},{"key":"e_1_2_18_79_1","doi-asserted-by":"crossref","DOI":"10.2340\/actadv.v104.34034","article-title":"Did we forget about social determinants of health in dermatology?","volume":"104","author":"Christensen EMM","year":"2024","journal-title":"Acta Derm Venereol"},{"issue":"1","key":"e_1_2_18_80_1","doi-asserted-by":"crossref","DOI":"10.5070\/D329160222","article-title":"Social support is associated with reduced impact of hidradenitis suppurativa on quality of life: an observational study","volume":"29","author":"Singh R","year":"2023","journal-title":"Dermatol Online J"},{"issue":"6","key":"e_1_2_18_81_1","doi-asserted-by":"crossref","first-page":"421","DOI":"10.1007\/s00403-019-02027-3","article-title":"Hidradenitis suppurativa on Facebook: thematic and content analyses of patient support group","volume":"312","author":"Fisher S","year":"2020","journal-title":"Arch Dermatol Res"},{"issue":"16","key":"e_1_2_18_82_1","doi-asserted-by":"crossref","DOI":"10.3390\/ijerph17166000","article-title":"Quality of life in cohabitants of patients with hidradenitis suppurativa: a cross\u2010sectional study","volume":"17","author":"Ramos\u2010Alejos\u2010Pita C","year":"2020","journal-title":"Int J Environ Res Public Health"},{"issue":"3","key":"e_1_2_18_83_1","doi-asserted-by":"crossref","first-page":"136","DOI":"10.1159\/000286958","article-title":"Effects of interventions involving the family in the treatment of adult patients with chronic physical diseases: a meta\u2010analysis","volume":"79","author":"Hartmann M","year":"2010","journal-title":"Psychother Psychosom"},{"issue":"1","key":"e_1_2_18_84_1","doi-asserted-by":"crossref","first-page":"107","DOI":"10.1002\/jvc2.99","article-title":"Sustainable patient education in hidradenitis suppurativa","volume":"2","author":"Christensen EMM","year":"2023","journal-title":"JEADV Clin Pract"},{"issue":"2","key":"e_1_2_18_85_1","doi-asserted-by":"crossref","first-page":"510","DOI":"10.1016\/j.jaad.2019.09.019","article-title":"Characterizing inpatient hospitalizations for hidradenitis suppurativa in the United States","volume":"82","author":"Anzaldi L","year":"2020","journal-title":"J Am Acad Dermatol"},{"key":"e_1_2_18_86_1","doi-asserted-by":"crossref","first-page":"80","DOI":"10.1016\/j.jdin.2022.08.015","article-title":"Neighborhood\u2010based analysis of adolescent hidradenitis suppurativa prevalence in a large metropolitan area","volume":"9","author":"Vuong CL","year":"2022","journal-title":"JAAD Int"},{"issue":"1","key":"e_1_2_18_87_1","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1111\/bjd.17101","article-title":"Impact of hidradenitis suppurativa on work loss, indirect costs and income","volume":"181","author":"Tzellos T","year":"2019","journal-title":"Br J Dermatol"},{"key":"e_1_2_18_88_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2026.03.035"},{"issue":"8","key":"e_1_2_18_89_1","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\u2010analysis","volume":"155","author":"Machado MO","year":"2019","journal-title":"JAMA Dermatol"},{"issue":"2","key":"e_1_2_18_90_1","doi-asserted-by":"crossref","DOI":"10.3390\/jcm15020700","article-title":"A cross\u2010sectional study on relationships between depression and anxiety in hidradenitis suppurativa patients and disease severity, subjective symptoms and quality of life","volume":"15","author":"Szepietowska M","year":"2026","journal-title":"J Clin Med"},{"issue":"3","key":"e_1_2_18_91_1","doi-asserted-by":"crossref","first-page":"175","DOI":"10.5093\/pi2025a14","article-title":"Peer support in chronic conditions from the peer supporters' perspective: a systematic review","volume":"34","author":"Braun A","year":"2025","journal-title":"Psychosoc Interv"},{"issue":"1","key":"e_1_2_18_92_1","doi-asserted-by":"crossref","first-page":"427","DOI":"10.1186\/s12913-022-07816-7","article-title":"Peer support for people with chronic conditions: a systematic review of reviews","volume":"22","author":"Thompson DM","year":"2022","journal-title":"BMC Health Serv Res"},{"issue":"1","key":"e_1_2_18_93_1","doi-asserted-by":"crossref","first-page":"72","DOI":"10.1111\/ced.14826","article-title":"Patient experiences with hidradenitis suppurativa: the hidradenitis patient experience survey","volume":"47","author":"Kashetsky N","year":"2022","journal-title":"Clin Exp Dermatol"},{"issue":"7","key":"e_1_2_18_94_1","doi-asserted-by":"crossref","first-page":"707","DOI":"10.1001\/jamadermatol.2025.1190","article-title":"Neighborhood socioeconomic status and new hidradenitis suppurativa diagnoses in a single health system","volume":"161","author":"Chang AY","year":"2025","journal-title":"JAMA Dermatol"},{"issue":"1","key":"e_1_2_18_95_1","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1186\/s40900-025-00685-4","article-title":"Bridging the gap: empowering patients as research partners through a structured training program","volume":"11","author":"Redding A","year":"2025","journal-title":"Res Involv Engagem"},{"issue":"1","key":"e_1_2_18_96_1","doi-asserted-by":"crossref","first-page":"8","DOI":"10.17294\/2330-0698.1770","article-title":"Facilitators and barriers to patient\u2010centered outcomes research partnership sustainability in the United States","volume":"8","author":"Hall TL","year":"2021","journal-title":"J Patient Cent Res Rev"},{"issue":"1","key":"e_1_2_18_97_1","doi-asserted-by":"crossref","first-page":"80","DOI":"10.1186\/s40900-023-00488-5","article-title":"Recognizing patient partner contributions to health research: a systematic review of reported practices","volume":"9","author":"Fox G","year":"2023","journal-title":"Res Involv Engagem"},{"issue":"3","key":"e_1_2_18_98_1","doi-asserted-by":"crossref","first-page":"526","DOI":"10.1016\/j.pec.2008.07.018","article-title":"Barriers and facilitators to implementing shared decision\u2010making in clinical practice: update of a systematic review of health professionals' perceptions","volume":"73","author":"Legare F","year":"2008","journal-title":"Patient Educ Couns"},{"key":"e_1_2_18_99_1","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1038\/s44277-025-00048-7","article-title":"Breaking barriers: centering researchers with lived experience in psychiatric neuroscience","volume":"3","author":"Chatterjee UR","year":"2025","journal-title":"NPP Digit Psychiatry Neurosci"}],"container-title":["Journal of the European Academy of Dermatology and Venereology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jdv.70788","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/jdv.70788","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jdv.70788","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T11:40:47Z","timestamp":1791632447000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jdv.70788"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10,10]]},"references-count":98,"alternative-id":["10.1111\/jdv.70788"],"URL":"https:\/\/doi.org\/10.1111\/jdv.70788","archive":["Portico"],"relation":{},"ISSN":["0926-9959","1468-3083"],"issn-type":[{"value":"0926-9959","type":"print"},{"value":"1468-3083","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10,10]]},"assertion":[{"value":"2026-07-13","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-08-25","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-10-10","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"jdv.70788"}}