A key factor associated with delayed diagnosis for non-White patients is the lack of awareness that their symptoms are associated with a treatable medical condition, according to Oma Agbai, MD, and Lisa Nyanda-Manalo, MD.
Hidradenitis suppurativa (HS), also known as acne inversa, is a chronic condition that causes painful acne-like pimples, sores, or cysts. These occur in areas where sweat glands are located, such as the armpits, groin, inner thighs, and underneath the breasts, although they can also occur in other locations. Without treatment, HS can cause abscesses, infection, and even difficulty walking or sitting, and scarring can cause difficulty stretching or bending.1
Biracial and African American women aged 30 to 39 years are at higher risk for HS, and study results show that Black people develop HS more often than people of other races. A 2017 study found that for every 100,000 African Americans, 296 had HS.1
In addition to race, risk factors include being a woman, having a blood relative with HS, having psoriasis, being overweight, being exposed to a trigger such as smoking, and being between adolescence and aged 40 years.2
Study results indicate that patients of color have a longer delay in diagnosis than their White counterparts and that Black patients do not see a dermatologist as early in the course of the disease as other racial groups.3 In this article, we examine those findings and speak with 2 experts on ways dermatologists can help patients of color with HS.
Diagnosis and Treatment
Although the cause of HS is unclear, evidence shows that HS may be an autoimmune disease. However, more research is needed.2
HS is diagnosed by reviewing the patient’s medical history and performing a physical exam. Leaking sores may be swabbed and tested, or biopsy may be used to rule out other conditions. How HS is treated depends on the severity of the condition. Treatment involves relieving pain, reducing flare-ups, healing wounds, and preventing the condition from worsening.4
Medications may include antibiotics such as clindamycin or dapsone, anti-inflammatory drugs such as metformin, and immunosuppressants. Although many medications are used to treat HS, adalimumab (Humira) is the only FDA-approved drug for the treatment of moderate to severe HS. In severe cases of HS, surgery may be needed.4
In addition to treatments, quitting smoking and losing weight can help relieve patients’ symptoms.4
A study conducted by Serrano et al published in the Journal of the National Medical Association found racial disparities in the diagnosis and treatment of HS.3
Researchers conducted a retrospective chart review of 1190 patients with HS who visited an urban Midwestern academic center 3 or more times between January 1, 2002, and March 19, 2019. A total of 953 patients were included in the analysis investigating delays in diagnosis and types of treatment. The authors recorded data including date of symptom onset, whether a patient had seen a dermatologist, the time from onset to the patient’s first dermatology visit, visits to other providers prior to seeing a dermatologist, gender, ethnicity, race, and date and age of diagnosis. They also looked at patient insurance at the time of diagnosis and tobacco use.
The study cohort had a mean age of 35.5 years at the time of diagnosis, and the mean (SD) delay of HS diagnosis was 4.1 (7) years. The results showed clear differences in the time it took to diagnose HS by race: White patients reported a shorter delay in diagnosis compared with Black patients, Hispanic patients, and other races. After adjusting for insurance and tobacco use, Black patients experienced a delay in diagnosis 1.62 times greater than that of White patients (P = .0013).3
Of the 932 patients in the study with known specialist visits, 53.6% had seen a dermatologist. White and Hispanic patients saw a dermatologist an average of 3 years after the first presentation of HS, whereas Black patients saw a dermatologist an average of 5 years after the first presentation (P = .004). Out of those who saw a dermatologist, Black patients were most likely to see surgery before dermatology (44.9%), followed by White patients (31.6%), Hispanic patients (23.1%), and other races (30.8%) (P < .001).3
“Our results indicate that non-White patients have a longer delay in diagnosis than their White counterparts and that Black patients do not see dermatology as early in their disease course as other racial groups. Black patients also see surgery more often than White patients before seeing dermatology, which could suggest greater disease severity at presentation and diagnosis or difficult access to dermatology,” Serrano and colleagues concluded.3
Dermatology Times® spoke with 2 experts on ways dermatologists can help patients of color with HS: Oma Agbai, MD, director of the service for multicultural dermatology and hair disorders in the Department of Dermatology at University of California Davis Health in Sacramento, California and Lisa Nyanda-Manalo, MD, of Advanced Dermatology and Cosmetic Surgery in Spring Hill, Florida.
Q: What actions can dermatologists take to specifically combat delays in diagnosis of HS for patients of color?
Agbai said the sooner a patient of color with HS can get referred to a board-certified dermatologist, the sooner the patient is likely to be correctly diagnosed and treated. “The key for dermatologists treating patients of color with HS is to let their primary care colleagues know that they welcome referrals for individuals presenting with symptoms concerning HS,” she said.
Nyanda-Manalo added that dermatologists should work to increase awareness about HS to combat treatment delays in patients of color. For example, dermatologists could provide educational materials in the office to help facilitate open discussions. “The key factor associated with the delay in diagnosis is the lack of awareness that their HS symptoms are associated with a treatable medical condition,” Nyanda-Manalo said. “This directly contributes to delayed care and causes significant complications as the disease progresses.”
Q: What can dermatologists do to help people with skin of color be treated equitably for HS?
“Patients of color often express to me that they feel that previous physicians did not listen to them or take their concerns seriously,” Agbai explained. “I believe this may be an indication of racial bias in the medical field, albeit unintentional at times. What is the answer to this problem? Education can make a profound difference. When physicians are educated on the reality of health disparities for patients of color with conditions like HS, my hope is that special attention and care will be taken to ensure that patients of all skin types are heard, and their concerns promptly and thoroughly addressed to the best of the physician’s ability.”
Nyanda-Manalo said dermatologists should provide treatment options that are achievable and accessible to all patients. For most patients to adhere to their treatment regimen, they must understand the treatment plan and have access to the medications prescribed. She added that dermatologists should stress to their patients that this condition is multifactorial and can be associated with underlying comorbidities.
“I recommend that dermatologists...coordinate care with their patients’ primary care physicians in order to ensure that those treatable comorbidities are not only addressed but also appropriately managed as well,” she said.
Q: What is especially important for dermatologists to know about HS?
Agbai noted that dermatologists can sometimes diagnose HS based on a history of what a patient may describe as boils or abscesses in areas characteristic of HS: the axillae, groin, and inframammary areas.
“I often have patients present with a history of involvement of these areas, but the areas are clear on exams or have minimal scarring or hyperpigmentation at the time of the office visit,” Agbai said. “Even in those cases, I can make a diagnosis of suspected HS and initiate topical or oral therapy, depending on the frequency and severity of flares.”
She added that early treatment intervention can help slow or stop the progression of disease to more severe stages when full anatomic areas can be affected by sinus tracts, nodules, and scarring.
Nyanda-Manalo emphasized that dermatologists need to understand the psychosocial components of HS in addition to the physical ones and that these underlying factors must be addressed together to improve a patient’s overall well-being.
“HS has been known to be associated with causing significant depression, which can lead to delayed care. Patients with HS can feel alone and isolated, so it is important for dermatologists to reassure them and provide them with support.”
Nyanda-Manalo also explained that HS can be painfully disfiguring and affect patients’ ability to function in their day-to-day lives, including effects to their mental well-being and relationships. “Dermatologists can provide the patient with links to support groups so that they can connect with other patients dealing with and navigating through this condition,” she said.
Q: Do you have any additional advice or concluding thoughts for fellow dermatologists?
“[Patients of color with HS] often tell me that they feel embarrassed about their condition and have been hesitant to discuss this with their doctors. This is often because of the nodules, pain, drainage, and bleeding in sensitive areas, such as the groin and buttocks, and the social stigma associated with this,” Agbai noted. She stressed that if a patient raises concerns about abscesses, nodules, or drainage in these sensitive areas, a physician should take their patient’s concern seriously and proactively evaluate the patient for treatment.
Nyanda-Manalo added that treatment for HS in patients with skin of color may be delayed due to the lack of access to care. Adding to Agbai’s comment about patients being embarrassed by their disease, Nyanda-Manalo noted that patients of color may not be aware of the association between HS and other conditions, such as diabetes, obesity, or depression.
“It is important as providers to promote open discussions about HS as a chronic inflammatory condition that can be properly treated and managed with good, coordinated care,” Nyanda-Manalo concluded. “I believe that as we gain more awareness of this condition, we will start to bridge the gaps that have led to significant health disparities in this population.”
1. Garg A, Kirby JS, Lavian J, et al. Sex- and age-adjusted population analysis of prevalence estimates for hidradenitis suppurativa in the United States. JAMA Dermaol. 2017;153(8):760–764. doi:10.1001/jamadermatol.2017.0201
2. Hidradenitis suppurativa: overview. American Academy of Dermatology. Updated May 3, 2022. Accessed January 25, 2023. https://www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-overview
3. Hidradenitis suppurativa: causes. American Academy of Dermatology. Updated May 3, 2022. Accessed January 25, 2023. https://www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-causes
4. Serrano L, Ulschmid C, Szabo A, Roth G, Sokumbi O. Racial disparities of delay in diagnosis and dermatologic care for hidradenitis suppurativa. J Natl Med Assoc. 2022;114(6):613-616. doi:10.1016/j.jnma.2022.08.002
5. Hidradenitis suppurativa: diagnosis and treatment. American Academy of Dermatology. Updated May 3, 2022. Accessed January 25, 2023. https://www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-treatment