Patients can wait up to 10 years for a diagnosis of hidradenitis suppurativa, says an Australian expert.
The impact of hidradenitis suppurativa on quality of life is worse than that of heart attack or inflammatory bowel disease, an Australian study has found.
And some patients are waiting up to 10 years to get a diagnosis, prompting calls from one of the study authors for more awareness and education for healthcare professionals.
Associate Professor Erin McMeniman, a specialist dermatologist at the Princess Alexandra Hospital and chair of the Queensland Faculty of Dermatology, said hidradenitis suppurativa (HS) treatment had come a long way in the past decade, but there were still huge barriers to timely diagnosis.
“Having listened to hundreds of patients’ stories now of the trauma they have gone though in many years, and many doctors that they’ve seen prior to diagnosis that really compounds the impact of the condition on not only their physical health and the scarring, but also their mental health,” she said.
“The findings from clinical examination mimic other simple diagnoses such as recurrent abscesses and therefore it has had a lot of misdiagnoses, and there is an under-awareness of the condition and a lack of teaching in medical schools.
“Interestingly, it is actually more common than inflammatory bowel disease, Crohn’s disease, and ulcerative colitis combined, and everybody knows about that.”
The cross-sectional survey-based study, published in the Australasian Journal of Dermatology, was conducted between 2018 and 2021 and included adult patients with HS at a tertiary public hospital and a private dermatology clinic in Brisbane.
About 90 patients completed three quality of life (QOL) surveys, including the Dermatology Life quality Index (DLQI), the Hidradenitis Suppurativa Quality of Life (HiSQOL) score and the World Health Organisation Quality of Life – BREF questionnaire (WHOQOL-BREF).
The researchers wrote that the DLQI score demonstrated that HS has “a very large impact” on HS participants’ QOL and was higher than patients with moderate-to-severe psoriasis.
“Over one third of participants were not currently working, in keeping with the known impact of HS on absenteeism and presenteeism,” they wrote.
“We have demonstrated the association between HS symptoms and HS-related depression, anxiety and embarrassment during sexual activity.”
The HS cohort WHOQOL-BREF domain scores (physical, psychological, social and environmental) were all worse than Australian population normative data.
“The HS participant cohort had an overall poorer QOL compared to published data for patients with atopic dermatitis, inflammatory bowel disease, myocardial infarction, lower limb amputation, chronic stroke and chronic hepatitis C,” the authors wrote.
“Despite this, there remains a lack of health-care resources, education and a greater delay to diagnosis compared to other medical diseases with less impact to QOL.”
Professor McMeniman said an international study had shown there was an average seven-year delay in diagnosis for most patients with HS.
“But in our group at the PA Hospital, which arguably is in a country with an excellent healthcare system, good levels of education, our delay to diagnosis was over 10 years and people had, on average, seen more than five doctors before their diagnosis,” she said.
GPs, emergency doctors and surgeons were often the first health professionals to see patients with HS lesions, and they were often mistaken for abscesses.
“Because it looks like an abscess, they often will go to a GP or ED and be referred to a surgeon for incision and drainage,” said Professor McMeniman.
“And nobody is diagnosing the condition despite repeated presentations. We just need awareness so that patients can be referred to a specialist.”
Stigma was also a major barrier to diagnosis and treatment, and she said patients were “often demoralised by the health system.”
“Patients with this disease have gone unnoticed, without any specific help,” she said.
“I think it’s the nature of the disease, confusion of the diagnosis and the fact that the patients haven’t lobbied together to say, this is not my fault, I have an immune disease, and I deserve better care.
“There’s no reason we can’t tackle that with medical schools and medical students so that everybody knows there is this recurrent immune condition of the skin, it’s like inflammatory bowel disease of the skin and it needs to have a referral to a dermatologist.”
Professor McMeniman has been treating HS patients for many years and has been involved in the development of a special interest clinic with a multi-disciplinary team that receives referrals from around Queensland and even interstate. She said the disease was a lot more common than most people realised, affecting close to one in 100 people.
“This disease has such a big impact, and it is common, but a lot of people are just suffering in silence in their community,” she said.
“A lot of patients have given up in presenting to medical care because they’ve gone through years of trying and not getting any improvement and so a lot of them are really impacted physically, emotionally, and they’ve often just stopped bothering to go, so they try to find ways to deal with the lesions themselves.”
HS is associated with several other conditions, including polycystic ovarian syndrome, inflammatory bowel disease, metabolic syndrome, diabetes mellitus type 2 and depression. It is estimated that 30% to 40% of patients have a family history of HS.
