{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T04:03:24Z","timestamp":1792555404223,"version":"4.5.0"},"reference-count":29,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2022,11,7]],"date-time":"2022-11-07T00:00:00Z","timestamp":1667779200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"name":"Building Interdisciplinary Research Careers in Women\u2019s Health"},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"crossref","award":["K12D085850"],"award-info":[{"award-number":["K12D085850"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,1,23]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Pain is rated by patients with hidradenitis suppurativa (HS) as the disease\u2019s most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient\u2013provider relationships and help identify strategies for addressing HS pain.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>This qualitative study sought to characterize lived pain experiences of those with HS.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>English-speaking patients \u2265 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of \u2265 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants\u2019 HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3\u20137; scale ranges from 0 to 10, with 10 being most pain). Participants\u2019 descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients\u2019 QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/bjd\/ljac018","type":"journal-article","created":{"date-parts":[[2023,1,20]],"date-time":"2023-01-20T09:18:01Z","timestamp":1674206281000},"page":"41-51","source":"Crossref","is-referenced-by-count":48,"title":["Pain experiences among those living with hidradenitis suppurativa: a qualitative study"],"prefix":"10.1093","volume":"188","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0534-2854","authenticated-orcid":false,"given":"Lauren A V","family":"Orenstein","sequence":"first","affiliation":[{"name":"Department of Dermatology, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6640-8944","authenticated-orcid":false,"given":"Nicole","family":"Salame","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6497-0354","authenticated-orcid":false,"given":"Meron R","family":"Siira","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5054-0716","authenticated-orcid":false,"given":"Megan","family":"Urbanski","sequence":"additional","affiliation":[{"name":"Department of Surgery, Division of Transplantation, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nyla I","family":"Flowers","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Harika","family":"Echuri","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0886-6856","authenticated-orcid":false,"given":"Amit","family":"Garg","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra\/Northwell , New Hyde Park, NY , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2679-5764","authenticated-orcid":false,"given":"Anne Marie","family":"McKenzie-Brown","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberly A","family":"Curseen","sequence":"additional","affiliation":[{"name":"Department of Family and Preventive Medicine, Division of Palliative Medicine, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2573-9963","authenticated-orcid":false,"given":"Rachel E","family":"Patzer","sequence":"additional","affiliation":[{"name":"Department of Surgery, Division of Transplantation, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5283-0792","authenticated-orcid":false,"given":"Dio","family":"Kavalieratos","sequence":"additional","affiliation":[{"name":"Department of Family and Preventive Medicine, Division of Palliative Medicine, Emory University School of Medicine , Atlanta, GA , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0678-7380","authenticated-orcid":false,"given":"Suephy C","family":"Chen","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Duke University School of Medicine , Durham, NC , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2022,11,7]]},"reference":[{"key":"2023100516255489900_ljac018-B1","doi-asserted-by":"crossref","first-page":"924","DOI":"10.1001\/jamadermatol.2021.1677","article-title":"Prevalence of hidradenitis suppurativa: a systematic review and meta-regression analysis","volume":"157","author":"Jfri","year":"2021","journal-title":"JAMA Dermatol"},{"key":"2023100516255489900_ljac018-B2","doi-asserted-by":"crossref","first-page":"760","DOI":"10.1001\/jamadermatol.2017.0201","article-title":"Sex- and age-adjusted population analysis of prevalence estimates for hidradenitis suppurativa in the United States","volume":"153","author":"Garg","year":"2017","journal-title":"JAMA Dermatol"},{"key":"2023100516255489900_ljac018-B3","doi-asserted-by":"crossref","first-page":"1038","DOI":"10.1016\/j.jaad.2017.07.027","article-title":"Uncovering burden disparity: a comparative analysis of the impact of moderate-to-severe psoriasis and hidradenitis suppurativa","volume":"77","author":"Hamzavi","year":"2017","journal-title":"J Am Acad Dermatol"},{"key":"2023100516255489900_ljac018-B4","doi-asserted-by":"crossref","first-page":"49","DOI":"10.1007\/s11916-017-0647-3","article-title":"Pain, psychological comorbidities, disability, and impaired quality of life in hidradenitis suppurativa [corrected]","volume":"21","author":"Patel","year":"2017","journal-title":"Curr Pain Headache Rep"},{"key":"2023100516255489900_ljac018-B5","doi-asserted-by":"crossref","first-page":"621","DOI":"10.1016\/j.jaad.2006.08.061","article-title":"Quality of life impairment in hidradenitis suppurativa: a study of 61 cases","volume":"56","author":"Wolkenstein","year":"2007","journal-title":"J Am Acad Dermatol"},{"key":"2023100516255489900_ljac018-B6","doi-asserted-by":"crossref","first-page":"1092","DOI":"10.1016\/j.jaad.2021.01.059","article-title":"Comorbidity screening in hidradenitis suppurativa: evidence-based recommendations from the US and Canadian Hidradenitis Suppurativa Foundations","volume":"86","author":"Garg","year":"2022","journal-title":"J Am Acad Dermatol"},{"key":"2023100516255489900_ljac018-B7","doi-asserted-by":"crossref","first-page":"675","DOI":"10.1016\/j.jaad.2021.02.066","article-title":"Clinical and psychosocial factors affecting work productivity among patients with hidradenitis suppurativa: a cluster analytical investigation","volume":"86","author":"Jfri","year":"2022","journal-title":"J Am Acad Dermatol"},{"key":"2023100516255489900_ljac018-B8","doi-asserted-by":"crossref","first-page":"1042","DOI":"10.1111\/bjd.14975","article-title":"Sexual health and quality of life are impaired in hidradenitis suppurativa: a multicentre cross-sectional study","volume":"176","author":"Janse","year":"2017","journal-title":"Br J Dermatol"},{"key":"2023100516255489900_ljac018-B9","doi-asserted-by":"crossref","first-page":"264","DOI":"10.2340\/00015555-0866","article-title":"Psychophysical aspects of hidradenitis suppurativa","volume":"90","author":"Matusiak","year":"2010","journal-title":"Acta Derm Venereol"},{"key":"2023100516255489900_ljac018-B10","doi-asserted-by":"crossref","first-page":"757","DOI":"10.2340\/00015555-2967","article-title":"Influence of itch and pain on sleep quality in patients with hidradenitis suppurativa","volume":"98","author":"Kaaz","year":"2018","journal-title":"Acta Derm Venereol"},{"key":"2023100516255489900_ljac018-B11","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","year":"2018","journal-title":"Br J Dermatol"},{"key":"2023100516255489900_ljac018-B12","doi-asserted-by":"crossref","first-page":"1422","DOI":"10.1111\/bjd.13163","article-title":"The Hidradenitis Suppurativa Priority Setting Partnership","volume":"171","author":"Ingram","year":"2014","journal-title":"Br J Dermatol"},{"key":"2023100516255489900_ljac018-B13","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1179\/108331905X55776","article-title":"Visual analogue scale, numeric pain rating scale and the McGill pain Questionnaire: an overview of psychometric properties","volume":"10","author":"Kahl","year":"2005","journal-title":"Phys Ther Rev"},{"key":"2023100516255489900_ljac018-B14","doi-asserted-by":"crossref","first-page":"823","DOI":"10.1016\/j.jpain.2006.04.003","article-title":"The pain quality assessment scale: assessment of pain quality in carpal tunnel syndrome","volume":"7","author":"Jensen","year":"2006","journal-title":"J Pain"},{"key":"2023100516255489900_ljac018-B15","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1177\/120347540100500202","article-title":"Measurement properties of Skindex-16: a brief quality-of-life measure for patients with skin diseases","volume":"5","author":"Chren","year":"2001","journal-title":"J Cutan Med Surg"},{"key":"2023100516255489900_ljac018-B16","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1111\/j.1365-2230.1994.tb01167.x","article-title":"Dermatology Life Quality Index (DLQI) \u2013 a simple practical measure for routine clinical use","volume":"19","author":"Finlay","year":"1994","journal-title":"Clin Exp Dermatol"},{"key":"2023100516255489900_ljac018-B17","doi-asserted-by":"crossref","first-page":"606","DOI":"10.1046\/j.1525-1497.2001.016009606.x","article-title":"The PHQ-9: validity of a brief depression severity measure","volume":"16","author":"Kroenke","year":"2001","journal-title":"J Gen Intern Med"},{"key":"2023100516255489900_ljac018-B18","doi-asserted-by":"crossref","first-page":"1092","DOI":"10.1001\/archinte.166.10.1092","article-title":"A brief measure for assessing generalized anxiety disorder: the GAD-7","volume":"166","author":"Spitzer","year":"2006","journal-title":"Arch Intern Med"},{"key":"2023100516255489900_ljac018-B19","first-page":"623","volume-title":"Dermatologic Surgery: Principles and Practice","author":"Hurley","year":"1996","edition":"2nd edn."},{"key":"2023100516255489900_ljac018-B20","doi-asserted-by":"crossref","first-page":"241","DOI":"10.1016\/j.jid.2020.11.029","article-title":"Research techniques made simple: an introduction to qualitative research","volume":"141","author":"Bazen","year":"2021","journal-title":"J Invest Dermatol"},{"key":"2023100516255489900_ljac018-B21","doi-asserted-by":"crossref","first-page":"166","DOI":"10.1111\/bjd.18656","article-title":"Pain perception in patients with hidradenitis suppurativa","volume":"182","author":"Nielsen","year":"2020","journal-title":"Br J Dermatol"},{"key":"2023100516255489900_ljac018-B22","volume-title":"The Management of Pain","author":"Bonica","year":"1985","edition":"2nd edn"},{"key":"2023100516255489900_ljac018-B23","doi-asserted-by":"crossref","first-page":"591","DOI":"10.1177\/12034754211024157","article-title":"Hidradenitis suppurativa from a patient perspective including symptoms and self-treatment","volume":"25","author":"Huang","year":"2021","journal-title":"J Cutan Med Surg"},{"key":"2023100516255489900_ljac018-B24","doi-asserted-by":"crossref","first-page":"187","DOI":"10.1016\/j.jaad.2020.09.039","article-title":"Pain management in hidradenitis suppurativa and a proposed treatment algorithm","volume":"85","author":"Savage","year":"2021","journal-title":"J Am Acad Dermatol"},{"key":"2023100516255489900_ljac018-B25","doi-asserted-by":"crossref","first-page":"401","DOI":"10.1111\/bjd.19016","article-title":"The patient experience of pain in hidradenitis suppurativa","volume":"183","author":"Patel","year":"2020","journal-title":"Br J Dermatol"},{"key":"2023100516255489900_ljac018-B26","doi-asserted-by":"crossref","DOI":"10.3390\/jcm9124046","article-title":"Prevalence of neuropathic pain and related characteristics in hidradenitis suppurativa: a cross-sectional study","volume":"9","author":"Garcovich","year":"2020","journal-title":"J Clin Med"},{"key":"2023100516255489900_ljac018-B27","doi-asserted-by":"crossref","first-page":"457","DOI":"10.1177\/1203475420930222","article-title":"Validation of the \u00adthree-item Skindex-Mini among hidradenitis suppurativa patients with diverse racial backgrounds","volume":"24","author":"Orenstein","year":"2020","journal-title":"J Cutan Med Surg"},{"key":"2023100516255489900_ljac018-B28","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","year":"2018","journal-title":"Acta Derm Venereol"},{"key":"2023100516255489900_ljac018-B29","doi-asserted-by":"crossref","first-page":"59","DOI":"10.1159\/000502139","article-title":"Pruritus and malodour in patients with hidradenitis suppurativa: impact on quality of life and clinical features associated with symptom severity","volume":"236","author":"Molina-Leyva","year":"2020","journal-title":"Dermatology"}],"container-title":["British Journal of Dermatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/bjd\/advance-article-pdf\/doi\/10.1093\/bjd\/ljac018\/48446330\/ljac018.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/bjd\/article-pdf\/188\/1\/41\/51888838\/ljac018.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/bjd\/article-pdf\/188\/1\/41\/51888838\/ljac018.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,5]],"date-time":"2023-10-05T12:27:17Z","timestamp":1696508837000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/bjd\/article\/188\/1\/41\/6795862"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,11,7]]},"references-count":29,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2022,11,7]]},"published-print":{"date-parts":[[2023,1,23]]}},"URL":"https:\/\/doi.org\/10.1093\/bjd\/ljac018","relation":{},"ISSN":["0007-0963","1365-2133"],"issn-type":[{"value":"0007-0963","type":"print"},{"value":"1365-2133","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2023,1]]},"published":{"date-parts":[[2022,11,7]]}}}