Hidradenitis Suppurativa Changes Major Life Decisions of Affected Patients: A Cross-sectional Study
DOI:
https://doi.org/10.2340/actadv.v106.adv-2026-0427Keywords:
Hidradenitis suppurativa, psychosocial burden, major life-changing decisionsAbstract
Hidradenitis suppurativa (HS) is a chronic inflammatory disease associated with substantial physical and psychosocial burden. Its long-term impact on major life-changing decisions (MLCD) remains poorly investigated. This cross-sectional study included 123 adult HS patients assessed using the validated Major Life-Changing Decision Profile (MLCDP). Disease severity was evaluated with Hurley staging and IHS4. Quality of life (DLQI, HiSQOL), disease acceptance (AIS), and psychiatric symptoms (PHQ-9, GAD-7) were also assessed. Overall, 87.887.8% of patients reported at least one affected MLCD, with a mean of 6.2±65.2 decisions per patient. The mean MLCDP total score was 20.1±1720.91 points, without sex differences. The most frequently affected areas concerned lifestyle habits, physical activity, and intimate relationships. Patients with Hurley stage III demonstrated significantly higher MLCDP scores compared with stages I and II. MLCDP correlated with IHS4 (r=r0.218), pain intensity (r=r0.256), DLQI (r=r0.401), HiSQOL (r=r0.507), PHQ-9 (r=r0.354), and GAD-7 (r=r0.315) (all p<p0.05). A strong inverse correlation was observed with illness acceptance (r = −0.584, p<p0.001). HS substantially influences key life decisions, particularly in patients with advanced disease and reduced psychological adaptation.
Downloads
References
Jemec GBE. Clinical practice. Hidradenitis suppurativa. N Engl J Med 2012; 366: 158–164. DOI: https://doi.org/10.1056/NEJMcp1014163
Sabat R, Alavi A, Wolk K, Wortsman X, McGrath B, Garg A, et al. Hidradenitis suppurativa. Lancet 2025; 405: 420–438. DOI: https://doi.org/10.1016/S0140-6736(24)02475-9
Di Cesare A, Nikolakis G, Kanni T, Giamarellos-Bourboulis EJ, Matusiak L, Szepietowski JC, et al. Identification of clinical features affecting diagnostic delay in paediatric hidradenitis suppurativa: results from a multicentre observational study. Br J Dermatol 2022; 187: 428–430. DOI: https://doi.org/10.1111/bjd.21247
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. DOI: https://doi.org/10.1111/bjd.14038
Krajewski PK, Matusiak Ł, Ständer S, Thaçi D, Szepietowski JC, Zirpel H. Risk of cardiovascular disorders in hidradenitis suppurativa patients: a large-scale, propensity-matched global retrospective cohort study. Int J Dermatol 2024; 63: 799–805. DOI: https://doi.org/10.1111/ijd.17186
Chernyshov PV, Finlay AY, Tomas-Aragones L, Poot F, Sampogna F, Marron SE, et al. Quality of life in hidradenitis suppurativa: an update. Int J Environ Res Public Health 2021; 18: 18. DOI: https://doi.org/10.3390/ijerph18116131
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: 11. DOI: https://doi.org/10.3390/life11010034
Krajewski PK, Strobel A, Schultheis M, Staubach P, Grabbe S, Hennig K, et al. Profound sexual dysfunction among patients with hidradenitis suppurativa: a cross-sectional study. Dermatol Ther 2024; 14: 1823–1838. DOI: https://doi.org/10.1007/s13555-024-01196-y
Gupta AK, Liddy A, Economopoulos V, Magalhaes R. Global patterns of comorbidities among patients with hidradenitis suppurativa: a systematic review and meta-analysis. Int J Dermatol 2026; 65: 991–998. DOI: https://doi.org/10.1111/ijd.70131
Szepietowska M, Krajewski PK, Pacan P, Wojas-Pelc A, Matusiak L, Jaworek AK. A cross-sectional study on relationships between depression and anxiety in hidradenitis suppurativa patients and disease severity, subjective symptoms, and quality of life. J Clin Med 2026; 15: 15. DOI: https://doi.org/10.3390/jcm15020700
Dalgard FJ, Gieler U, Tomas-Aragones L, Lien L, Poot F, Jemec GBE, et al. The psychological burden of skin diseases: a cross-sectional multicenter study among dermatological out-patients in 13 European countries. J Invest Dermatol 2015; 135: 984–991. DOI: https://doi.org/10.1038/jid.2014.530
Bhatti ZU, Salek S, Finlay AY. Concept of major life-changing decisions in life course research. Curr Probl Dermatol 2013; 44: 52–66. DOI: https://doi.org/10.1159/000350389
Bhatti ZU, Finlay AY, Bolton CE, George L, Halcox JP, Jones SM, et al. Chronic disease influences over 40 major life-changing decisions (MLCDs): a qualitative study in dermatology and general medicine. J Eur Acad Dermatol Venereol 2014; 28: 1344–1355. DOI: https://doi.org/10.1111/jdv.12289
Sampogna F. Life course impairment and quality of life over time. In: Kimball AB, Linder MD, editors. Dermatological Diseases and Cumulative Life Course Impairment: S.Karger AG. 2013: p. 0. DOI: https://doi.org/10.1159/000350781
Bhatti ZU, Salek SS, Bolton CE, George L, Halcox JP, Jones SM, et al. The development and validation of the major life changing decision profile (MLCDP). Health Qual Life Outcomes 2013; 11: 78. DOI: https://doi.org/10.1186/1477-7525-11-78
Bień B, Krajewski PK, Szepietowski JC. Life-changing decisions in patients suffering from psoriasis: a cross-sectional study. Dermatol Ther 2025; 15: 841–855. DOI: https://doi.org/10.1007/s13555-025-01370-w
Bień B, Krajewski PK, Szepietowski JC. Acne influences life-changing decisions among young adults. Ital J Dermatol Venerol 2024; 159: 174–181. DOI: https://doi.org/10.23736/S2784-8671.24.07754-5
Fuentes-Barragán L, García-Moronta C, Sanabria-de la Torre R, León-Pérez FJ, Molina-Leyva A, Arias-Santiago S, et al. Impact on major life-changing decisions in patients with atopic dermatitis. Acta Derm Venereol 2025; 105: adv42241. DOI: https://doi.org/10.2340/actadv.v105.42241
Sanchez-Diaz M, Díaz-Calvillo P, Soto-Moreno A, Molina-Leyva A, Arias-Santiago S. Factors influencing major life-changing decisions in patients with psoriasis: a cross-sectional study. Acta Derm Venereol 2023; 103: adv11640. DOI: https://doi.org/10.2340/actadv.v103.11640
Ureña-Paniego C, Soto-Moreno A, Díaz-Calvillo P, Cuenca-Barrales C, Molina-Leyva A, Arias-Santiago S. Impact of hidradenitis suppurativa on major life-changing decisions: a cross-sectional study. Indian J Dermatol 2025; 70: 283–286. DOI: https://doi.org/10.4103/ijd.ijd_926_23
Hurley H. Axillary hyperhidrosis, apocrine bromhidrosis, hidradenitis suppurativa, and familial benign pemphigus: surgical approachRoenigk R, Roenigk H, editors. Dermatologic surgery: Marcel Dekker; 1989: 729–739 pp.
Zouboulis CC, Tzellos T, Kyrgidis A, Jemec GBE, Bechara FG, Giamarellos-Bourboulis EJ, et al. Development and validation of the International Hidradenitis Suppurativa Severity Score System (IHS4), a novel dynamic scoring system to assess HS severity. Br J Dermatol 2017; 177: 1401–1409. DOI: https://doi.org/10.1111/bjd.15748
Phan NQ, Blome C, Fritz F, Gerss J, Reich A, Ebata T, et al. Assessment of pruritus intensity: prospective study on validity and reliability of the visual analogue scale, numerical rating scale and verbal rating scale in 471 patients with chronic pruritus. Acta Derm Venereol 2012; 92: 502–507. DOI: https://doi.org/10.2340/00015555-1246
Wójcik E, Reszke R, Krajewski PK, Matusiak Ł, Madziarska K, Ali FM, et al. Major life changing decision profile: creation of the Polish language version. Dermatol Ther 2021; 34: e14568. DOI: https://doi.org/10.1111/dth.14568
Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)--a simple practical measure for routine clinical use. Clin Exp Dermatol 1994; 19: 210–216. DOI: https://doi.org/10.1111/j.1365-2230.1994.tb01167.x
Szepietowski J, Salomon J, Finlay AY. Dermatology life quality index (DLQI): Polish version. Clin Dermatol 2004.
Thorlacius L, Esmann S, Miller I, Vinding G, Jemec GBE. Development of HiSQOL: a hidradenitis suppurativa-specific quality of life instrument. Skin Appendage Disord 2019; 5: 221–229. DOI: https://doi.org/10.1159/000496234
Krajewski PK, Matusiak Ł, Szepietowska M, Rymaszewska JE, Jemec GBE, Kirby JS, et al. Hidradenitis Suppurativa Quality of Life (HiSQOL): creation and validation of the Polish language version. Postepy Dermatol Alergol 2021; 38: 967–972. DOI: https://doi.org/10.5114/ada.2020.97064
Felton BJ, Revenson TA, Hinrichsen GA. Stress and coping in the explanation of psychological adjustment among chronically ill adults. Soc Sci Med 1984; 18: 889–898. DOI: https://doi.org/10.1016/0277-9536(84)90158-8
Juczynski Z. Skala akceptacji choroby AIS. In: Narzędzia pomiaru w promocji i psychoonkologii zdrowia: Pracownia Testów Psychologicznych. 2009: p. 162–166.
Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 2001; 16: 606–613. DOI: https://doi.org/10.1046/j.1525-1497.2001.016009606.x
Dajpratham P, Pukrittayakamee P, Atsariyasing W, Wannarit K, Boonhong J, Pongpirul K. The validity and reliability of the PHQ-9 in screening for post-stroke depression. BMC Psychiatry 2020; 20: 291. DOI: https://doi.org/10.1186/s12888-020-02699-6
Spitzer RL, Kroenke K, Williams JBW, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 2006; 166: 1092–1097. DOI: https://doi.org/10.1001/archinte.166.10.1092
Plummer F, Manea L, Trepel D, McMillan D. Screening for anxiety disorders with the GAD-7 and GAD-2: a systematic review and diagnostic metaanalysis. Gen Hosp Psychiatry 2016; 39: 24–31. DOI: https://doi.org/10.1016/j.genhosppsych.2015.11.005
Arnett JJ. Emerging adulthood. A theory of development from the late teens through the twenties. Am Psychol 2000; 55: 469–480. DOI: https://doi.org/10.1037/0003-066X.55.5.469
Poulsen AH, Zhang DG, Nielsen VW, Maul JT, Ring HC, Thyssen JP, et al. Impact of smoking on disease severity and treatment outcomes in hidradenitis suppurativa. J Eur Acad Dermatol Venereol 2026. DOI: https://doi.org/10.1111/jdv.70344
Mallela T, Sayed C. Smoking tobacco is associated with specific phenotypes of hidradenitis suppurativa. Int J Dermatol 2026; 65: 193–197. DOI: https://doi.org/10.1111/ijd.70074
Theut Riis P, Saunte DM, Benhadou F, Del Marmol V, Guillem P, El-Domyati M, et al. Low and high body mass index in hidradenitis suppurativa patients-different subtypes? J Eur Acad Dermatol Venereol 2018; 32: 307–312. DOI: https://doi.org/10.1111/jdv.14599
Krajewski PK, Złotowska A, Szepietowski JC. The therapeutic potential of GLP-1 receptor agonists in the management of hidradenitis suppurativa: a systematic review of anti-inflammatory and metabolic effects. J Clin Med 2024; 13: 13. DOI: https://doi.org/10.3390/jcm13216292
Cuenca-Barrales C, Montero-Vílchez T, Szepietowski JC, Matusiak L, Molina-Leyva A. Sexual impairment in patients with hidradenitis suppurativa: a systematic review. J Eur Acad Dermatol Venereol 2021; 35: 345–352. DOI: https://doi.org/10.1111/jdv.16726
Published
How to Cite
License
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
All digitalized ActaDV contents is available freely online. The Society for Publication of Acta Dermato-Venereologica owns the copyright for all material published until volume 88 (2008) and as from volume 89 (2009) the journal has been published fully Open Access, meaning the authors retain copyright to their work.
Unless otherwise specified, all Open Access articles are published under CC-BY-NC licences, allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for non-commercial purposes, provided proper attribution to the original work.
