Hidradenitis Suppurativa: Overview, Patient Burden, and Challenges to Diagnosis

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EP: 1.Hidradenitis Suppurativa: Overview, Patient Burden, and Challenges to Diagnosis

Hi, and welcome to this Dermatology Times Partner Perspectives video series. I’m Tiffany Mayo, associate professor, vice chair of diversity and inclusion, and director of the clinical research unit at the Heersink School of Medicine department of dermatology at the University of Alabama at Birmingham. In this video series, I will review the skin disorder hidradenitis suppurativa, or HS, discuss disease severity and treatment guidelines, and explore practical tips regarding diagnosis, treatment, and patient communication. Before we get to those topics, let’s talk about the burden of HS and its diagnostic challenges.

This episode, "Hidradenitis Suppurativa: Overview, Patient Burden, and Challenges to Diagnosis" is sponsored by Novartis, and I have been compensated for my time.

I’ll start by giving a brief overview of HS. It’s a chronic, disabling disorder most frequently involving the terminal follicular unit of apocrine gland-bearing skin, which is mostly the axilla and groin region, though it can occur in other locations.¹ It’s characterized by nodules, abscesses, and purulent drainage,² and it has an increased prevalence in women.¹ Based on current estimates, HS affects approximately point 053% to 4.10% of the general population.³

The pathophysiology of HS is not fully known, but our current knowledge of its mechanism is key toward understanding how the disease progresses.⁴

HS is thought to involve a mixture of genetic and environmental factors that contribute to perifollicular inflammation. This inflammation leads to follicular occlusion and eventual rupture, during which time intrafollicular debris is released into the dermis and increases inflammation.^2,5 Multiple cytokines, such as interleukin, or IL-17, IL-23, IL-1β, IL-1α, IL-12, and tumor necrosis factor α, are involved in both the development and progression of HS. They contribute to inflammation and subsequent damage to the tissue.⁶

The burden of HS is quite high, resulting in a considerably greater impact on a patient’s health-related quality of life than other high-burden skin diseases.⁷ For instance, in results from studies exploring HS, quality-of-life measures were worse than those reported in other studies of alopecia, acne, psoriasis, urticaria, and atopic dermatitis.⁷

The most “bothersome” symptom of HS reported by patients is chronic pain^8,9 which can subsequently contribute to insomnia and poor sleep quality.⁹ Approximately 62% of patients with HS can experience painful abscesses that do not subside, according to results from the UNITE study.¹⁰

Mental health issues are frequently experienced by patients with HS. Depression and anxiety are common, and suicide risk is higher than that of the general population.^9,11 Patients report disturbances of social activities, diminished sexual health, low self-esteem, and issues with body image, all of which further contribute to the experience of depression.⁹ According to the UNITE study, 58% of patients with HS report anxiety.¹²

In addition, according to the UNITE study, approximately 40% of patients with HS are unable to work,¹¹ and results from literature demonstrate that the patients who are employed take an average of 14.2 to 33.6 HS-related sick days per year.⁹ These patients can experience frequent visits to the emergency department. Results from a retrospective claim analysis found that adult patients with HS averaged 3.5 visits per person over 5 years.¹³

Diagnosis of HS is dependent on clinical evaluation rather than lab confirmation and can be complicated by the presence of lesions in subcutaneous skin layers.¹⁴ These diagnostic challenges can contribute to misdiagnosis and/or delayed diagnosis and appropriate intervention. The average time from symptom onset to accurate diagnosis is 7 to 10 years,^15-17 at which point the disease has typically reached a severe stage.¹

A delayed diagnosis, and therefore a delay in appropriate treatment, can result in uncontrolled disease activity, including fibrosis and scarring, and sinus tract formation. At this stage, the scarring and tunnels are often irreversible.¹ Patients may also experience a reduced quality of life¹¹ and resistance to treatment.¹⁷

Early diagnosis and treatment are essential for patients with HS. Early treatment targets reversible lesions, and it may be associated with improved treatment outcomes. Importantly, treating during what we call this “window of opportunity” may halt the progression of HS before patients develop irreversible scars and/or diminished quality of life.¹⁸

In the next video, I’ll be delving into greater details on HS progression through mild to severe disease. Thank you to our viewers for watching.

References

1. Kimball AB, Jemec GBE, eds. Hidradenitis Suppurativa: A Disease Primer. Adis; 2017.

2. Saunte DML, Jemec GBE. JAMA. 2017;318(20):2019-2032.

3. Gill L et al. F1000Prime Rep. 2014;6:112.

4. Jemec GBE. N Engl J Med. 2012;366(2):158-164.

5. Goldburg SR et al. J Am Acad Dermatol. 2020;82(5):1045-1058.

6. Hunt A et al. Dermatol Ther (Heidelb). 2023;13(7):1391-1407.

7. Dufour DN et al. Postgrad Med J. 2014;90(1062):216-221.

8. Vossen ARJV et al. Front Immunol. 2018;9:2965.

9. Sabat R et al. Nat Rev Dis Primers. 2020;6(1):18.

10. von der Werth JM, Williams HC. J Eur Acad Dermatol Venereol. 2000;14(5):389-392.

11. Kimball AB et al. J Eur Acad Dermatol Venereol. 2020;34(6):1302-1308.

12. Prens EP et al. Am J Clin Dermatol. 2020;21(4):579-590.

13. Okun MM et al. J Emerg Med. 2022;63(5):636-644.

14. Mendes-Bastos P et al. Br J Dermatol. 2023;188(5):591-600.

15. Atzori L et al. Clinical Dermatology. 2017;5(1):1-4.

16. Garg A et al. J Am Acad Dermatol. 2020;82(2):366-376.

17. Snyder CL et al. Clin Cosmet Investig Dermatol. 2023;16:1833-1841.

18. Marzano AV et al. Br J Dermatol. 2021;184(1):133-140.