Social media, biologic therapies and improved education are helping shift awareness of hidradenitis suppurativa – but there is still much to be done.
New Australian data has revealed widespread gaps in medical education and the heavy day-to-day impact of hidradenitis suppurativa.
The findings, presented at the recent Annual Scientific Meeting of the Australasian College of Dermatologists, come amid what specialists say is a major shift in awareness of the chronic inflammatory disease among both patients and healthcare professionals.
“There has been improved patient voice on the disease,” said consultant dermatologist Associate Professor Erin McMeniman from Princess Alexandra Hospital.
“Patients are less ashamed and fearful of seeking medical help, and we have increasing numbers of referrals into both private and public services for HS.”
Professor McMeniman told Dermatology Republic that growing awareness of HS extended well beyond dermatology, with emergency physicians, general practitioners, gastroenterologists and colorectal and plastic surgeons becoming increasingly familiar with the condition.
“As we’re talking about it more, people are realising it is actually not that uncommon,” she said. “In fact, [HS] is more common than inflammatory bowel disease, [affecting] about 0.7% of the population.”
HS is a chronic auto-inflammatory disease characterised by recurrent painful nodules, abscesses and scarring, typically affecting areas such as the armpits, groin and under the breasts.
Professor McMeniman said patients have historically faced years of delayed diagnosis, stigma and ineffective treatment – many for decades.
She said social media and online communities had played an unexpectedly important role in helping patients recognise the disease and seek care.
“For diseases where there has been some shame around it, and people have hidden it, often not even showing their friends and family, social media can help them realise it’s not their fault, it’s an immune disease, and they are entitled to seeking effective treatment,” she said.
One of the studies presented at the meeting examined knowledge of HS among doctors and clinical-year medical students.
In the Queensland-based study, 182 participants completed baseline surveys, including 134 doctors and 48 senior medical students.
Nearly half reported receiving very limited dermatology teaching at medical school, while many participants who had heard of HS said they had never received formal education about the disease.
Researchers identified significant misconceptions, including participants incorrectly associating HS with poor hygiene. After completing a short online educational module, participants demonstrated improved understanding of the disease and its management.
Professor McMeniman, one of the researchers, said the project was motivated by the experiences of patients who had spent years seeking answers.
“Our average delay to diagnosis at the PA (Princess Alexandra Hospital HS service) was 10 years, and in the worldwide multicentre study it was 7.1 years,” she said.
“Patients had seen an average of five doctors before diagnosis, and they were presenting, but they were just being told it’s abscesses and boils, have five days of antibiotics, wash more and sent away.”
She said the goal of the educational module was not to turn every junior doctor into an HS specialist, but to ensure clinicians recognised the condition early enough to refer appropriately.
“My dream would be that we can roll that brief module – it takes about 20 minutes – out to final-year medical students, and one day when they see it in an emergency department or GP clinic they’ll recognise that the disease exists,” she told DR.
Professor McMeniman said earlier diagnosis could dramatically alter patients’ long-term outcomes.
“I’m very reassured when I see some patients who’ve had disease duration of less than six months, teenagers, and they get referred appropriately by their GP to the clinic,” she said.
“That’s such a great time to intervene and treat them appropriately and aggressively to control the inflammation and try to curtail that massive impact on life trajectory.”
She described seeing patients whose disease had profoundly affected careers, relationships and mental health.
“Patients have never had a sexual relationship, or had their career curtailed because they couldn’t have a job where they needed to be in the office eight to five because they never knew when their draining tracts might leak through their underwear and clothing,” she said.
Professor McMeniman and colleagues also presented plans at the ADC ASM to standardise HS documentation through a dedicated electronic medical record template developed at Princess Alexandra Hospital.
The template captures disease severity, lesion counts, treatment history, adverse effects and patient-reported outcomes to improve continuity of care and support future research.
She said standardised scoring systems were essential for tracking disease progression and treatment response over time.
“If you say in a clinical note that the patient is ‘doing better’, what does that mean?” she said.
“We need reproducible scoring that can be tracked over time and help communication about disease severity and response to treatment.”
She said better longitudinal data could also help answer longstanding questions about the natural history of the disease.
“We wish we had answers for patients asking when the disease will burn out, but we just don’t have the studies yet,” she said.
“Better documentation can help us learn what’s the expected prognosis and what responds best to treatment.”
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Another study using data from the Australasian Dermatology Registry examined patient-reported triggers and wound care burden among people living with HS.
Stress emerged as the most commonly reported trigger, followed by pressure or friction on the skin and menstrual cycles.
The researchers also documented substantial dressing use and associated costs, with some patients spending more than $100 on dressings over four weeks.
Professor McMeniman said the stress findings were particularly important because they reinforced the biological relationship between psychological stress and inflammatory disease.
“I love that we’re getting evidence for stress, because I’m hoping one day that will help us get patients access to psychological services,” she said.
“We know emotional stress and cortisol release can impact immune pathways and flare conditions like lupus, psoriasis, eczema, acne and HS.”
While there is still no cure for HS, she said treatment options had improved dramatically over the past decade, particularly with the introduction of biologic therapies and specialised surgery.
“The response rate from biologic agents now is between 60 and 80%,” she said.
“If a patient’s only got one or two areas and can have effective surgery coupled with medical therapy, there’s actually really good response rates.”
She also credited pharmaceutical companies with helping raise awareness and fund research into the disease, despite broader concerns often directed at the industry.
“When it comes to HS, companies have poured resources into online campaigns that have helped patients find a diagnosis, and funding those research trials has been imperative to us having effective treatment options,” she said.
Looking ahead, Professor McMeniman said the next major challenge would be building more comprehensive multidisciplinary HS services similar to those available for inflammatory bowel disease, including access to specialist nurses, psychologists, dietitians and exercise physiologists.
“That’s really the next thing,” she said.
“We’d love to have holistic team care for these patients.”
