Improving Hidradenitis Suppurativa Outcomes by Addressing Treatment Gaps

Patients with hidradenitis suppurativa experience knowledge gaps on effective treatments and addressing these gaps could help prevent tissue damage among these patients. | Image Credit: Yurii Kibalnik - stock.adobe.com

Hidradenitis suppurativa (HS) severely impacts quality of life (QOL), with delayed diagnosis and treatment leading to increased disease severity, complications, and poorer outcomes, highlighting the urgent need for early intervention and improved access to care, according to a review published in the Journal of the American Academy of Dermatology.¹

HS has one of the most severe impacts on patient QOL compared with other dermatology diseases. The condition, also known as acne inversa, appears as small, painful lumps that form under the skin that usually heal slowly, recur, and lead to tunneling under skin and scarring.² Symptoms are common in areas where skin chafes like the armpits, groin, buttocks, and breasts.

Patients with HS experience unpredictable flares, extreme pain, odor, drainage that may require wound care, along with emotional triggers of isolation, shame, and embarrassment.¹ The Hidradenitis Suppurativa Quality of Life score was created to measure the QOL of patients and includes assessments neglected in the Dermatology Life Quality Index.

Pain symptoms are most strongly associated with impacting QOL. Patients who identified as Black, had advanced disease, and experienced depression or anxiety were more likely to experience greater pain severity. Additionally, according to Mayo Clinic, Black people are more likely to develop HS than people of other races, possibly due to genetic factors.²

Patients with HS are at an increased risk of experiencing weakened QOL scores across different aspects of life, including personal appearance, self-confidence, mood, personal relationships, leisure activities, motivation, career, and finances.¹ Patients with HS were also more likely to have lower socioeconomic status, oftentimes because the burden of HS interferes with work productivity. Patients with HS also had higher reports of unemployment, slower income growth, higher risk of leaving the workforce, decreased annual income, and higher absenteeism compared with people without HS. It is worth noting that unemployment creates a greater impact on QOL that forms a vicious cycle.

Aside from QOL affected by HS symptoms, patients are also at risk for other chronic conditions. “We know that there's higher rates of psoriasis in HS patients compared to people who don't have HS,” Chris Sayed, MD, dermatologist and a professor at the University of North Carolina at Chapel Hill Department of Dermatology said in an interview with The American Journal for Managed Care^®.³

It can take patients an average of 7 to 10 years to receive an official diagnosis for HS, with patients typically taking about 2.3 years from initial symptom onset to receiving their first medical consultation.¹ Diagnosis delays for HS are often associated with patients experiencing more severe disease, more comorbidities, and more frequent surgical interventions.

“Increasing disease awareness among health care providers and the public through various channels, including social media, may help reduce time to diagnosis,” the authors added.

“A cure for HS is something that is hard to really completely define at this point,” Sayed said.³ As a result, patients are often subject to multiple therapeutic trials that create a regimen of combined therapies to obtain disease control.¹ Treatment typically consists of both medical and surgical therapies.

When treatment is delayed, certain medications could lead to disease progression and increased odds of treatment ineffectiveness. For example, adalimumab therapy that is delayed for more than 10 years can almost double the odds of failure to respond.

“The widespread availability of expert HS care with current and novel therapeutics is essential to deliver disease control and improve QOL,” study authors concluded.

References

1. Daveluy S, Okoye GA. Quality of life and the patient journey in hidradenitis suppurativa. J Am Acad Dermatol. 2024;91(6):S8-S11. doi:10.1016/j.jaad.2024.09.008
2. Hidradenitis suppurativa - symptoms and causes. Mayo Clinic. 2019. Accessed January 27, 2025. https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/symptoms-causes/syc-20352306
3. Shaw ML. HS treatment goals: better quality of life, not just control. The American Journal for Managed Care®. January 3, 2025. Accessed January 27, 2025. https://www.ajmc.com/view/hs-treatment-goals-better-quality-of-life-not-just-control