Hidradenitis Suppurativa International Online Community: Patient Characteristics and a Novel Model of Treatment Effectiveness


  • Jen Barak-Levitt StuffThatWorks, Tel Aviv, Israel; Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv; Israel Division of Dermatology, Rabin Medical Center – Beilinson Hospital, Petach Tikva, Israel
  • Ron Held StuffThatWorks, Tel Aviv, Israel
  • Yossi Synett StuffThatWorks, Tel Aviv, Israel
  • Noa Kremer Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, Division of Dermatology, Rabin Medical Center – Beilinson Hospital, Petach Tikva, Israel
  • Emmilia Hodak Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv; Israel Division of Dermatology, Rabin Medical Center – Beilinson Hospital, Petach Tikva, Israel
  • Shany Sherman Division of Dermatology, Rabin Medical Center – Beilinson Hospital, Petach Tikva 4941492, Israel




hidradenitis suppurativa, patient-reported outcome, comorbidities, treatment effectiveness, machine learning, artificial intelligence


Treatment for hidradenitis suppurativa is diverse, yet frequently unsatisfactory. The aims of this study were to create a reproducible artificial intelligence-based patient-reported outcome platform for evaluation of the clinical characteristics and comorbidities of patients with hidradenitis suppurativa, and to use this to grade treatment effectiveness. A retrospective patient- reported outcome study was conducted, based on online questionnaires completed by English-speaking patients registered to the hidradenitis suppurativa StuffThatWorks® online community. Data collected included patient characteristics, comorbidities and treatment satisfaction. These were recoded into scalable labels using a combination of machine learning algorithm, manual coding and validation. A model of treatment effectiveness was generated. The cohort included 1,050 patients of mean ± standard deviation age 34.3 ± 10.3 years. Greater severity of hidradenitis suppurativa was associated with younger age at onset (p < 0.001) and male sex (p < 0.001). The most frequent comorbidities were depression (30%), anxiety (26.4%), and polycystic ovary syndrome (16.6%). Hurley stage I patients rated topical agents, dietary changes, turmeric, and pain relief measures more effective than tetracyclines. For Hurley stage II, adalimumab was rated most effective. For Hurley stage III, adalimumab, other biologic agents, systemic steroids, and surgical treatment were rated more effective than tetracyclines. Patients with hidradenitis suppurativa often have comorbid psychiatric and endocrine diseases. This model of treatment effectiveness provides a direct comparison of standard and complementary options.


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Saunte DM, Boer J, Stratigos A, Szepietowski JC, Hamzavi I, Kim KH, et al. Diagnostic delay in hidradenitis suppurativa is a global problem. Br J Dermatol 2015; 173: 1546-1549.

https://doi.org/10.1111/bjd.14038 DOI: https://doi.org/10.1111/bjd.14038

Bettoli V, Naldi L, Cazzaniga S, Zauli S, Atzori L, Borghi A, et al. Overweight, diabetes and disease duration influence clinical severity in hidradenitis suppurativa-acne inversa: evidence from the national Italian registry. Br J Dermatol 2016; 174: 195-197.

https://doi.org/10.1111/bjd.13864 DOI: https://doi.org/10.1111/bjd.13864

Mebazaa A, Ben Hadid R, Cheikh Rouhou R, Trojjet S, El Euch D, Mokni M, et al. Hidradenitis suppurativa: a disease with male predominance in Tunisia. Acta Dermatovenerol Alp Pannonica Adriat 2009; 18: 165-172.

Vazquez BG, Alikhan A, Weaver AL, Wetter DA, Davis MD. Incidence of hidradenitis suppurativa and associated factors: a population-based study of Olmsted County, Minnesota. J Invest Dermatol 2013; 133: 97-103.

https://doi.org/10.1038/jid.2012.255 DOI: https://doi.org/10.1038/jid.2012.255

McMillan K. Hidradenitis suppurativa: number of diagnosed patients, demographic characteristics, and treatment patterns in the United States. Am J Epidemiol 2014; 179: 1477-1483.

https://doi.org/10.1093/aje/kwu078 DOI: https://doi.org/10.1093/aje/kwu078

Revuz JE, Canoui-Poitrine F, Wolkenstein P, Viallette C, Gabison G, Pouget F, et al. Prevalence and factors associated with hidradenitis suppurativa: results from two case-control studies. J Am Acad Dermatol 2008; 59: 596-601.

https://doi.org/10.1016/j.jaad.2008.06.020 DOI: https://doi.org/10.1016/j.jaad.2008.06.020

Lachaine J, Miron A, Shear N, Alhusayen R. The prevalence and incidence of hidradenitis suppurativa in Canada: results from a population based survey. Value Health 2016; 19: A123.

https://doi.org/10.1016/j.jval.2016.03.495 DOI: https://doi.org/10.1016/j.jval.2016.03.495

Jemec GB, Heidenheim M, Nielsen NH. The prevalence of hidradenitis suppurativa and its potential precursor lesions. J Am Acad Dermatol 1996; 35: 191-194.

https://doi.org/10.1016/S0190-9622(96)90321-7 DOI: https://doi.org/10.1016/S0190-9622(96)90321-7

Jemec GB, Heidenheim M, Nielsen NH. [Prevalence of hidradenitis suppurativa in Denmark]. Ugeskr Laeger 1998; 160: 847-849 (in Danish).

Alikhan A, Lynch PJ, Eisen DB. Hidradenitis suppurativa: a comprehensive review. J Am Acad Dermatol 2009; 60: 539-561; quiz 562-563.

https://doi.org/10.1016/j.jaad.2008.11.911 DOI: https://doi.org/10.1016/j.jaad.2008.11.911

Goldburg SR, Strober BE, Payette MJ. Hidradenitis suppurativa: epidemiology, clinical presentation, and pathogenesis. J Am Acad Dermatol 2020; 82: 1045-1058.

https://doi.org/10.1016/j.jaad.2019.08.090 DOI: https://doi.org/10.1016/j.jaad.2019.08.090

Alikhan A, Sayed C, Alavi A, Alhusayen R, Brassard A, Burkhart C, et al. North American clinical management guidelines for hidradenitis suppurativa: a publication from the United States and Canadian Hidradenitis Suppurativa Foundations: Part I: Diagnosis, evaluation, and the use of complementary and procedural management. J Am Acad Dermatol 2019; 81: 76-90.

https://doi.org/10.1016/j.jaad.2019.02.067 DOI: https://doi.org/10.1016/j.jaad.2019.02.067

Rambhatla PV, Lim HW, Hamzavi I. A systematic review of treatments for hidradenitis suppurativa. Arch Dermatol 2012; 148: 439-446.

https://doi.org/10.1001/archdermatol.2011.1950 DOI: https://doi.org/10.1001/archdermatol.2011.1950

Slade DE, Powell BW, Mortimer PS. Hidradenitis suppurativa: pathogenesis and management. Br J Plast Surg 2003; 56: 451-461.

https://doi.org/10.1016/S0007-1226(03)00177-2 DOI: https://doi.org/10.1016/S0007-1226(03)00177-2

Zouboulis CC, Desai N, Emtestam L, Hunger RE, Ioannides D, Juhász I, et al. European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa. J Eur Acad Dermatol Venereol 2015; 29: 619-644.

https://doi.org/10.1111/jdv.12966 DOI: https://doi.org/10.1111/jdv.12966

Zouboulis CC, Bechara FG, Dickinson-Blok JL, Gulliver W, Horváth B, Hughes R, et al. Hidradenitis suppurativa/acne inversa: a practical framework for treatment optimization - systematic review and recommendations from the HS ALLIANCE working group. J Eur Acad Dermatol Venereol 2019; 33: 19-31.

https://doi.org/10.1111/jdv.15233 DOI: https://doi.org/10.1111/jdv.15233

Alavi A, Lynde C, Alhusayen R, Bourcier M, Delorme I, George R, et al. Approach to the management of patients with hidradenitis suppurativa: a consensus document. J Cutan Med Surg 2017; 21: 513-524.

https://doi.org/10.1177/1203475417716117 DOI: https://doi.org/10.1177/1203475417716117

Rondags A, van Straalen KR, van Hasselt JR, Janse IC, Ardon CB, Vossen ARJV, et al. Correlation of the refined Hurley classification for hidradenitis suppurativa with patient-reported quality of life and objective disease severity assessment. Br J Dermatol 2019; 180: 1214-1220.

https://doi.org/10.1111/bjd.17508 DOI: https://doi.org/10.1111/bjd.17508

Rondags A, Volkering RJ, Turcan I, Zuidema YS, Janse IC, Horvath B. The Refined Hurley Patient Questionnaire: an accurate self-assessment instrument for deriving the correct refined hurley stage in hidradenitis suppurativa. Acta Derm Venereol 2019; 99: 703-704.

https://doi.org/10.2340/00015555-3126 DOI: https://doi.org/10.2340/00015555-3126

Kimball AB, Sobell JM, Zouboulis CC, Gu Y, Williams DA, Sundaram M, et al. HiSCR (Hidradenitis Suppurativa Clinical Response): a novel clinical endpoint to evaluate therapeutic outcomes in patients with hidradenitis suppurativa from the placebo-controlled portion of a phase 2 adalimumab study. J Eur Acad Dermatol Venereol 2016; 30: 989-994.

https://doi.org/10.1111/jdv.13216 DOI: https://doi.org/10.1111/jdv.13216

Vellaichamy G, Braunberger TL, Jones JL, Peacock A, Nahhas AF, Hamzavi IH. Patient-reported outcomes in hidradenitis suppurativa. G Ital Dermatol Venereol 2019; 154: 137-147.

https://doi.org/10.23736/S0392-0488.18.06021-2 DOI: https://doi.org/10.23736/S0392-0488.18.06021-2

Fernandez JM, Thompson AM, Borgstrom M, Orenstein LAV, Hsiao JL, Shi VY. Pain management modalities for hidradenitis suppurativa: a patient survey. J Dermatolog Treat 2020; 20: 1-4

https://doi.org/10.1080/09546634.2020.1822501 DOI: https://doi.org/10.1080/09546634.2020.1822501

Krajewski PK, Matusiak Ł, von Stebut E, Schultheis M, Kirschner U, Nikolakis G, et al. Quality-of-life impairment among patients with hidradenitis suppurativa: a cross-sectional study of 1795 patients. Life 2021; 11: 34.

https://doi.org/10.3390/life11010034 DOI: https://doi.org/10.3390/life11010034

Schrader AM, Deckers IE, van der Zee HH, Boer J, Prens EP. Hidradenitis suppurativa: a retrospective study of 846 Dutch patients to identify factors associated with disease severity. J Am Acad Dermatol 2014; 71: 460-467.

https://doi.org/10.1016/j.jaad.2014.04.001 DOI: https://doi.org/10.1016/j.jaad.2014.04.001

Choi F, Lehmer L, Ekelem C, Mesinkovska NA. Dietary and metabolic factors in the pathogenesis of hidradenitis suppurativa: a systematic review. Int J Dermatol 2020; 59: 143-153.

https://doi.org/10.1111/ijd.14691 DOI: https://doi.org/10.1111/ijd.14691

Delany E, Gormley G, Hughes R, McCarthy S, Kirthi S, Markham T, et al. A cross-sectional epidemiological study of hidradenitis suppurativa in an Irish population (SHIP). J Eur Acad Dermatol Venereol 2018; 32: 467-473.

https://doi.org/10.1111/jdv.14686 DOI: https://doi.org/10.1111/jdv.14686

Wise J. Many people in UK underestimate their weight. BMJ 2015; 350: h2621.

https://doi.org/10.1136/bmj.h2621 DOI: https://doi.org/10.1136/bmj.h2621

Stommel M, Schoenborn CA. Accuracy and usefulness of BMI measures based on self-reported weight and height: findings from the NHANES & NHIS 2001-2006. BMC Public Health 2009; 9: 421.

https://doi.org/10.1186/1471-2458-9-421 DOI: https://doi.org/10.1186/1471-2458-9-421

Reddy S, Strunk A, Garg A. Comparative overall comorbidity burden among patients with hidradenitis suppurativa. JAMA Dermatol 2019; 155: 797-802.

https://doi.org/10.1001/jamadermatol.2019.0164 DOI: https://doi.org/10.1001/jamadermatol.2019.0164

Bui TL, Silva-Hirschberg C, Torres J, Armstrong AW. Hidradenitis suppurativa and diabetes mellitus: a systematic review and meta-analysis. J Am Acad Dermatol 2018; 78: 395-402.

https://doi.org/10.1016/j.jaad.2017.08.042 DOI: https://doi.org/10.1016/j.jaad.2017.08.042

Machado MO, Stergiopoulos V, Maes M, Kurdyak PA, Lin PY, Wang LJ, et al. Depression and anxiety in adults with hidradenitis suppurativa: a systematic review and meta-analysis. JAMA Dermatol 2019; 155: 939-945.

https://doi.org/10.1001/jamadermatol.2019.0759 DOI: https://doi.org/10.1001/jamadermatol.2019.0759

Hendricks AJ, Hsiao JL, Lowes MA, Shi VY. A comparison of international management guidelines for hidradenitis suppurativa. Dermatology 2021; 237: 81-96.

https://doi.org/10.1159/000503605 DOI: https://doi.org/10.1159/000503605

Andersen RK, Jemec GB. Treatments for hidradenitis suppurativa. Clin Dermatol 2017; 35: 218-224.

https://doi.org/10.1016/j.clindermatol.2016.10.018 DOI: https://doi.org/10.1016/j.clindermatol.2016.10.018

Savage KT, Singh V, Patel ZS, Yannuzzi CA, McKenzie-Brown AM, Lowes MA, et al. Pain management in hidradenitis suppurativa and a proposed treatment algorithm. J Am Acad Dermatol 2021; 85: 187-199.

https://doi.org/10.1016/j.jaad.2020.09.039 DOI: https://doi.org/10.1016/j.jaad.2020.09.039

Shehzad A, Rehman G, Lee YS. Curcumin in inflammatory diseases. Biofactors 2013; 39: 69-77.

https://doi.org/10.1002/biof.1066 DOI: https://doi.org/10.1002/biof.1066

van Straalen KR, Tzellos T, Guillem P, Benhadou F, Cuenca-Barrales C, Daxhelet M, et al. The efficacy and tolerability of tetracyclines and clindamycin plus rifampicin for the treatment of hidradenitis suppurativa: results of a prospective European cohort study. J Am Acad Dermatol 2021; 85: 369-378.

https://doi.org/10.1016/j.jaad.2020.12.089 DOI: https://doi.org/10.1016/j.jaad.2020.12.089

Ghias MH, Johnston AD, Kutner AJ, Micheletti RG, Hosgood HD, Cohen SR. High-dose, high-frequency infliximab: a novel treatment paradigm for hidradenitis suppurativa. J Am Acad Dermatol 2020; 82: 1094-1101.

https://doi.org/10.1016/j.jaad.2019.09.071 DOI: https://doi.org/10.1016/j.jaad.2019.09.071

Takeda K, Kikuchi K, Kanazawa Y, Yamasaki K, Aiba S. Ustekinumab treatment for hidradenitis suppurativa. J Dermatol 2019; 46: 1215-1218.

https://doi.org/10.1111/1346-8138.15122 DOI: https://doi.org/10.1111/1346-8138.15122

Whitaker C, Stevelink S, Fear N. The use of Facebook in recruiting participants for health research purposes: a systematic review. J Med Internet Res 2017; 19: e290.

https://doi.org/10.2196/jmir.7071 DOI: https://doi.org/10.2196/jmir.7071

Choi E, Cook AR, Chandran NS. Hidradenitis suppurativa: an Asian perspective from a Singaporean institute. Skin Appendage Disord 2018; 4: 281-285.

https://doi.org/10.1159/000481836 DOI: https://doi.org/10.1159/000481836

Loo CH, Tan WC, Tang JJ, Khor YH, Manikam MT, Low DE, et al. The clinical, biochemical, and ultrasonographic characteristics of patients with hidradenitis suppurativa in Northern Peninsular Malaysia: a multicenter study. Int J Dermatol 2018; 57: 1454-1463.

https://doi.org/10.1111/ijd.14210 DOI: https://doi.org/10.1111/ijd.14210



How to Cite

Barak-Levitt, J., Held, R., Synett, Y., Kremer, N., Hodak, E., & Sherman, S. (2022). Hidradenitis Suppurativa International Online Community: Patient Characteristics and a Novel Model of Treatment Effectiveness. Acta Dermato-Venereologica, 102, adv00686. https://doi.org/10.2340/actadv.v102.1056