Exploring the Impact of Fatigue and Sleep Disturbance in Hidradenitis Suppurativa: Perspectives from Patients and Healthcare Professionals
DOI:
https://doi.org/10.2340/actadv.v106.adv-2025-0179Keywords:
Disease burden, Fatigue, Hidradenitis suppurativa, Patients, Quality of life, Sleep disturbanceAbstract
Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that affects physical, social and emotional aspects of life for people living with HS (plwHS). Although many plwHS consider pain the most bothersome symptom, fatigue and sleep disturbance are underexplored in research and rarely discussed in clinical practice. This article shares perspectives from plwHS and people working with patients, including healthcare professionals (HCPs), from Europe and North America, on the impact of HS-related fatigue and sleep disturbance on quality of life (QoL). Fatigue was described as a debilitating symptom affecting QoL, with HCPs often noting that plwHS were unaware of the full impact of fatigue until treatment improved their HS symptoms. Sleep disturbance was mainly attributed to HS-related pain, pruritus and lesion drainage, with sleep deficits accumulating over time. The strain of HS impacted personal relationships, with plwHS expressing less interest in social interactions or intimate relationships, leading to feelings of guilt, failure, isolation and reduced self-esteem. Fatigue and sleep disturbance also affected work productivity, and consequently, career progression and financial stability. Recognizing the multifaceted HS symptoms, providing reasonable adjustments in the workplace, encouraging open dialogue with HCPs and measuring fatigue with a validated instrument could help improve QoL of plwHS.
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Gooderham M, Papp K. The psychosocial impact of hidradenitis suppurativa. J Am Acad Dermatol 2015; 73: S19–22 DOI: https://doi.org/10.1016/j.jaad.2015.07.054
Reddy S, Strunk A, Garg A. All-cause mortality among patients with hidradenitis suppurativa: a population-based cohort study in the United States. J Am Acad Dermatol 2019; 81: 937–942 DOI: https://doi.org/10.1016/j.jaad.2019.06.016
Shaver RL, Jemec GBE, Freese R, Alavi A, Lowes MA, Goldfarb N. A survey of clinicians regarding preferred severity assessment tools for hidradenitis suppurativa. Int J Dermatology 2021; 60: e248–e251 DOI: https://doi.org/10.1111/ijd.15295
Kimball AB, Kirby J, Ingram JR, Tran T, Pansar I, Ciaravino V, et al. Burden of hidradenitis suppurativa: a systematic literature review of patient reported outcomes. Dermatol Ther 2024; 14: 83–98 DOI: https://doi.org/10.1007/s13555-023-01085-w
Singh R, Kelly KA, Senthilnathan A, Feldman SR, Pichardo RO. Stigmatization, a social perception which may have a debilitating impact on hidradenitis suppurativa patients: an observational study. Arch Dermatol Res 2023; 315: 1049– 1052 DOI: https://doi.org/10.1007/s00403-022-02412-5
Caccavale S, Tancredi V, Boccellino MP, Babino G, Fulgione E, Argenziano G. Hidradenitis suppurativa burdens on mental health: a literature review of associated psychiatric disorders and their pathogenesis. Life 2023; 13: 189 DOI: https://doi.org/10.3390/life13010189
Schneider-Burrus S, Kalus S, Fritz B, Wolk K, Gomis- Kleindienst S, Sabat R. The impact of hidradenitis suppurativa on professional life. Br J Dermatol 2023; 188: 122–130 DOI: https://doi.org/10.1093/bjd/ljac027
Perche PO, Singh R, Senthilnathan A, Feldman SR, Pichardo RO. Hidradenitis suppurativa’s impact on social activities: an observational study. Cureus 2022; 14: e25292. DOI: https://doi.org/10.7759/cureus.25292
Matusiak Ł. Profound consequences of hidradenitis suppurativa: a review. Br J Dermatol 2020; 183: e171–e177 DOI: https://doi.org/10.1111/bjd.16603
Matusiak Ł, Szczęch J, Kaaz K, Lelonek E, Szepietowski JC. Clinical characteristics of pruritus and pain in patients with hidradenitis suppurativa. Acta Derm Venereol 2018; 98: 191–194 DOI: https://doi.org/10.2340/00015555-2815
Chodziuk A, Holgersen N, Nielsen VW, Thyssen JP, Egeberg A, Thomsen SF. Fatigue is associated with disease severity in adult patients with hidradenitis suppurativa. JEADV Clin Pract 2024; 3: 769–778. DOI: https://doi.org/10.1002/jvc2.345
Yeroushalmi S, Ildardashty A, Elhage KG, Chung M, Bartholomew E, Hakimi M, et al. Hidradenitis suppurativa and sleep: a systematic review. Arch Dermatol Res 2023; 315: 1409–1415 DOI: https://doi.org/10.1007/s00403-022-02460-x
Thorlacius L, Ingram JR, Villumsen B, Esmann S, Kirby JS, Gottlieb AB, et al. A core domain set for hidradenitis suppurativa trial outcomes: an international Delphi process. Br J Dermatol 2018; 179: 642–650 DOI: https://doi.org/10.1111/bjd.16672
Smets EM, Garssen B, Bonke B, De Haes JC. The Multidimensional Fatigue Inventory (MFI) psychometric qualities of an instrument to assess fatigue. J Psychosom Res 1995; 39: 315–325 DOI: https://doi.org/10.1016/0022-3999(94)00125-O
Tang H, Singh BSM, Fong W. Prevalence and factors associated with fatigue in patients with axial spondyloarthritis: a systematic review and meta-analysis. Rheumatol Adv Pract 2023; 7: rkad084 DOI: https://doi.org/10.1093/rap/rkad084
Mann C, Dreher M, Weeß HG, Staubach P. Sleep disturbance in patients with urticaria and atopic dermatitis: an underestimated burden. Acta Derm Venereol 2020; 100: adv00073 DOI: https://doi.org/10.2340/00015555-3416
Mann C, Gorai S, Staubach-Renz P, Goldust M. Sleep disorders in dermatology - a comprehensive review. J Dtsch Dermatol Ges 2023; 21: 577–584 DOI: https://doi.org/10.1111/ddg.14992
Polak D, Korkosz M, Guła Z. Sleep disorders in rheumatoid arthritis, axial spondyloarthritis and psoriatic arthritis. Rheumatol Int 2025; 45: 36 DOI: https://doi.org/10.1007/s00296-024-05780-5
Toledano E, Hidalgo C, Gómez-Lechón L, Ibáñez M, Chacón CC, Martín-Vallejo J, et al. SLEEP quality in patients with psoriatic arthritis and its relationship with disease activity and comorbidities: a cross-sectional study. Sci Rep 2023; 13: 22927 DOI: https://doi.org/10.1038/s41598-023-48723-z
Barnes A, Toson B, Bryant RV, Mukherjee S, Andrews JM, Spizzo P, et al. Latent profiles of fatigue in inflammatory bowel disease. BMC Gastroenterol 2024; 24: 148 DOI: https://doi.org/10.1186/s12876-024-03239-2
Sayed C, Martorell A, Alarcon I, Kasparek T, Frade S, McGrath BM, et al. 42927 Unmet needs in treatment options and management strategies in hidradenitis suppurativa: understanding the patient perspective through social media listening. J Am Acad Dermatol 2023; 89: AB102. DOI: https://doi.org/10.1016/j.jaad.2023.07.411
Garg A, Neuren E, Cha D, Kirby JS, Ingram JR, Jemec GBE, et al. Evaluating patients’ unmet needs in hidradenitis suppurativa: results from the Global Survey of Impact and Healthcare Needs (VOICE) project. J Am Acad Dermatol 2020; 82: 366–376 DOI: https://doi.org/10.1016/j.jaad.2019.06.1301
McWhirter L, Smyth H, Hoeritzauer I, Couturier A, Stone J, Carson AJ. What is brain fog? J Neurol Neurosurg Psychiatry 2023; 94: 321–325 DOI: https://doi.org/10.1136/jnnp-2022-329683
Kaaz K, Szepietowski JC, Matusiak Ł. Influence of itch and pain on sleep quality in patients with hidradenitis suppurativa. Acta Derm Venereol 2018; 98: 757–761 DOI: https://doi.org/10.2340/00015555-2967
Mullington JM, Simpson NS, Meier-Ewert HK, Haack M. Sleep loss and inflammation. Best Pract Res Clin Endocrinol Metab 2010; 24: 775–784 DOI: https://doi.org/10.1016/j.beem.2010.08.014
Cameron S, Donnelly A, Broderick C, Arichi T, Bartsch U, Dazzan P, et al. Mind and skin: exploring the links between inflammation, sleep disturbance and neurocognitive function in patients with atopic dermatitis. Allergy 2024; 79: 26–36 DOI: https://doi.org/10.1111/all.15818
Trupiano N, Young K, Echuri H, Maghfour J, Orenstein LAV, Hamzavi I. Exploring itch in hidradenitis suppurativa with lessons from atopic dermatitis and psoriasis. J Dermatol 2025; 52: 239–246 DOI: https://doi.org/10.1111/1346-8138.17622
Silverberg JI, Gooderham MJ, Paller AS, Deleuran M, Bunick CG, Gold LFS, et al. Early and sustained improvements in symptoms and quality of life with upadacitinib in adults and adolescents with moderate-tosevere atopic dermatitis: 52-week results from two phase III randomized clinical trials (Measure Up 1 and Measure Up 2). Am J Clin Dermatol 2024; 25: 485–496. DOI: https://doi.org/10.1007/s40257-024-00853-4
Giménez-Arnau A, Maurer M, Bernstein J, Staubach P, Barbier N, Hua E, et al. Ligelizumab improves sleep interference and disease burden in patients with chronic spontaneous urticaria. Clin Transl Allergy 2022; 12: e12121 DOI: https://doi.org/10.1002/clt2.12121
Disease state: hidradenitis suppurativa. The Hidradenitis Suppurativa Core Outcomes Set International Collaboration. [cited 2025 June 9]. Available from: https:// www.c3outcomes.org/historic
Mann C, Staubach P, Grabbe S, Wegner J, Hennig K, Nikolakis G, et al. Self-management-competency as a new target in Hidradenitis suppurativa care. J Dermatolog Treat 2023; 34: 2245082 DOI: https://doi.org/10.1080/09546634.2023.2245082
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