'Invisible visible minorities' in HS research
'Invisible visible minorities' in HS research
Little data exists on HS in Arab and South Asian patients, despite its prevalence in those populations (1,400 words, 7 minutes)
While hidradenitis suppurativa (HS) is common in South Asian and Middle Eastern patients, there is a lack of clinical information on these populations, Dr. Raed Alhusayen told delegates to the 8th annual Skin Spectrum Summit on Sept. 17, 2022.
Dr. Alhusayen is an assistant professor in the Division of Dermatology at the University of Toronto, an associate scientist at the Odette Cancer Research Program, and a staff physician in the Division of Dermatology at Sunnybrook Health Sciences Centre and Women's College Hospital.
He said that roughly 70% of participants in HS clinical trials are White, even though the skin condition is three times more common in Black patients.
But there is even less data on other populations, Dr. Alhusayen said. He called these groups “invisible visible minorities.”
Although he is of Middle Eastern heritage, he said he would be classified as White in any trials overseen by the U.S. FDA. The categories of Asian and White in the FDA trial guidelines are far too broad, Dr. Alhusayen said.
In particular, he pointed out the “White” category includes people from Europe, the Middle East, and North Africa.
“I think you would agree I would not qualify as White, not by name and not by my skin colour,” he said.
That group of “invisible visible minorities” represents most patients with HS, according to Dr. Alhusayen. Using data from Statistics Canada, he determined that in Toronto, about 30% of patients with HS are White, another 30% are South Asian, and 20% are Arab. But there is little information in the literature regarding HS in those last two groups.
“South Asians and Arabs are never going to be identified in clinical trials,” said Dr. Alhusayen. “But here we see that they represent about 40 per cent of HS patients. We do not know much about their disease severity. We do not know about the genetic factors related to this disease. We do not know whether they are different in their comorbidity profile. We do not know how they respond to treatment.”
In his practice, Dr. Alhusayen said he has observed that South Asian patients tend to have more severe HS than patients from other ethnic backgrounds.
Bottom Line: HS is more common in South Asian and Arab patients but there is a lack of data on those populations. Research that looks at HS presentation and treatment in these groups specifically is needed.
From the literature on hidradenitis suppurativa
Hidradenitis suppurativa: Estimated prevalence, clinical features, and risk factors in Riyadh, Saudi Arabia
The authors of this paper aimed to determine the prevalence, clinical features, risk factors, and comorbidities of hidradenitis suppurativa (HS) in Riyadh, Saudi Arabia.
They collected information on all confirmed cases of HS in King Abdulaziz Medical City from 2016 to 2020. The initial search produced 196 cases. Thirteen were excluded because the medical information was incomplete.
The investigators found the prevalence of HS was 1.29%. The mean age was 27 years, and most of the patients were male. More than one-third of the patients were morbidly obese, and most were in Hurley stage 1. The armpits were the most commonly affected area, followed by the groin area. Type-2 diabetes was the most common comorbidity, followed by lipid disorders and acne.
Hidradenitis suppurativa in East and Southeast Asian populations: A systematic review and meta-analysis
There is a poor understanding of how hidradenitis suppurativa (HS) characteristics differ in specific Asian ethnicities, according to the authors of this paper. They conducted the first systematic review and meta-analysis to characterize HS patients from East and Southeast Asia.
Searching the PubMed, Embase, and Ovid MEDLINE databases, the researchers screened English-language case series, cross-sectional, observational, and randomized controlled trial studies investigating HS in East and Southeast Asian populations by titles, abstracts, and articles in duplicate. From 136 citations, they included 10 studies in the final analysis. That totalled 30,125 HS patients.
Most patients were male (66%, 95% confidence interval (CI)=60-72%). The researchers found that about half of Asian patients with HS develop lesions in the armpits (52%, 95% CI=33-72%) and the buttocks (48%, 95% CI=38-57%). Only a small subset had a positive family history of HS (5%, 95% CI=2-8%).
A novel NCSTN mutation in a three-generation Chinese family with hidradenitis suppurativa
This paper describes the DNA analysis of a Chinese family with 10 members with hidradenitis suppurativa (HS).
The patient who triggered the study had multiple draining sinuses on the back of their neck, in both armpits, and around the anus. Investigators isolated DNA from peripheral blood samples of the patient and their family members.
Using these samples, the researchers identified a deletion mutation of the NCSTN gene (c.447delC(p.N150lfs*52)).
The authors write that finding this novel mutation that causes familial HS could expand the spectrum of known mutations in γ-secretase genes associated with HS.
Hidradenitis suppurativa: Evaluating activity patterns and predictors of recalcitrant course-A population-based study
This study out of Israel was conducted to identify activity patterns of hidradenitis suppurativa (HS) over time and to identify ways to predict which cases would be recalcitrant.
The researchers examined data on 4,417 patients with HS in the 10 years following their diagnosis. Patients were considered to have recalcitrant disease if they had five or more years of follow-up, with six or more “active months” in each year.
On average, patients had active disease for 1.37 (standard deviation 1.28) months each year. A total of 98 (2.2%) patients had a recalcitrant disease course and 1,390 (31.5%) had an indolent course.
The researchers identified several factors that independently predicted recalcitrant disease: Arab ethnicity (adjusted odds ratio (OR) 2.04; 95% confidence interval (CI) 1.20-3.48), being 38 years of age or older (adjusted OR, 6.17; 95% CI, 3.33-11.43), low socioeconomic status (adjusted OR, 1.64; 95% CI, 1.03-2.60), obesity (adjusted OR, 3.47; 95% CI, 2.25-5.34) and smoking (adjusted OR, 2.65; 95% CI, 1.57-4.47).
VIDEO: Hidradenitis suppurativa: Managing HS by IAVDL (Indian Association of Dermatologists, Venereologists and Leprologists) Telangana | Hetero Healthcare
At the intersection of skin and society
A Canadian branch of the non-profit Black Girls Hockey Club (BGHC) was launched in November 2022, reports The Hockey News.
The web page of BGHC Canada lists the organization’s mission:
BGHC Canada actively works to prevent exclusion in hockey based on race, gender, sexuality, or ability in the face of institutional racism, financial gatekeeping, and program access. The Black Girl Hockey Club Canada provides financial aid and scholarship opportunities as well as mentorship and community spaces that give Black women access to hockey.
The new branch was founded by Saroya Tinker, a defenseman on the Premier Hockey Federation team the Toronto Six.
BGHC was originally founded in the United States in 2018 by Renee Hess, Associate Director of Service Learning at La Sierra University in Riverdale, Calif.
“We see hockey as Canada's national sport and we want to promote the game to our BIPOC communities,” Tinker said, according to The Hockey News. “We want to build a safe space for them and I'm super-excited to partner with Jumpstart because we can implement so many programs due to their great access and what they have going on. Their support for BGHC has been unwavering since the beginning, and we're excited to move forward with them.”
BGHC Canada is also supported by Canadian Tire’s Jumpstart charity.
This week
November is Movember—Men’s Health Month
November is National Family Caregiver’s Month in the U.S.
Nov. 25 is International Day for the Elimination of Violence Against Women
Something to think about in the week ahead…
Next week
The Dermatology Industry Taskforce on Diversity, Inclusiveness & Equity (DiTiDE) has developed a Diversity & Inclusion Cultural Competency (DICC) toolkit for dermatologists. The toolkit was designed to support best practices and to make recommendations to doctors working with people with diverse skin tones to help fill resource gaps.
DiTiDE is a volunteer committee of Canadian life sciences managers and executives, physicians, and allied parties.
The next edition of Skin Spectrum Weekly will include an interview with DiTiDE member Matthew Page, National Medical Relations Manager at L’Oréal Canada about the toolkit and its functions.
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