Patients are still slipping through the cracks, experts warn.
Australian dermatologists and researchers hope the launch of a national hidradenitis suppurativa registry will lead to earlier diagnosis and better outcomes for patients.
And they believe it will also improve awareness of the chronic inflammatory condition that affects about 1% of Australians and has a devastating impact on quality of life.
Associate Professor Erin McMeniman, a specialist dermatologist at the Department of Dermatology, Princess Alexandra Hospital, and chair of the Australasian College of Dermatologists, said the new registry was a major step forward.
She said the HS data set would sit within the Australasian Dermatology Registry, and already 30 patients had joined.
Professor McMeniman, who has a special interest in HS, and colleagues presented news of the new registry at the ACD’s Annual Scientific Meeting in Perth last month.
“The quality-of-life evidence supports that [HS] has the biggest impact on quality of life of any dermatological disease,” she said.
“There’s a paper we’ve published in that AJD [Australasian Journal of Dermatology] that shows that its quality of life measures, using a scale that’s used by the World Health Organization that can compare different diseases, is higher than myocardial infarction, hepatitis and HIV.”
The registry is designed to capture referral and diagnosis data, the impact HS has on health-related quality of life including economic impact of dressings, treatment and time away from work, pain and pain management, in addition to the core registry items (demographics, family history, comorbidities, vaccinations, quality of life (DLQI), medications and surgeries).
It aims to assist patients by identifying gaps in diagnosis pathways to support earlier diagnosis and intervention; identifying triggers that can result in disease flare; advocating for patient support for dressings and over-the-counter product access; and identifying the economic cost to the patient, including loss of income, hospitalisations and treatments.
Professor McMeniman said Australia had come a long way in recent years in terms of HS awareness and diagnosis, and new biologics provided more treatment options.
“The improvements in the last five years have been absolutely incredible – we’re seeing so many more referrals come into the department,” she said.
“When I was a trainee 15 years ago, I think in my entire four years of training, I saw five people with the disease. We’ve got over 1000 patients now and new referrals coming in every week.
“The increased awareness has made us realise that a lot of patients were sitting out in the community suffering, being told they had recurrent infections, or various diagnoses that were incorrect. And now that there’s improved awareness, they’re getting appropriate referrals into derm services, which is excellent.”
She has been particularly encouraged to see more young patients come to the clinic early into their disease. Early diagnosis and treatment meant better outcomes, better mental health and better quality of life.
But patients were still slipping through the cracks, she warned, and there was still much more work to be done.
“A man I just saw this morning, he had over 60 years delayed diagnosis from onset in his teens, and he’s now in his mid-70s,” she said.
