Clinical Challenge: Diagnosing Hidradenitis Suppurativa

Clinicians and patients alike could make a strong case that diagnosis is the biggest challenge for hidradenitis suppurativa (HS); or more specifically, making the correct diagnosis and making it early.

A recent multinational survey of patients with HS captured the diagnostic confusion and missteps, as well as patients' frustration, resulting from inaccurate assessments of the disease. Almost two-thirds of the 1,300 patients said they had been evaluated by a physician at least five times before the correct diagnosis was made. The time to an accurate diagnosis averaged 10 years.

By the time clinicians arrived at a diagnosis, more than 80% of the patients reported flares that occurred at least monthly, including daily flares in almost a fourth of the survey participants. More than 60% of patients reported moderate-to-severe pain, 43% said HS had an extreme impact on their quality of life, and 14.5% reported being disabled.

Another recent report showed that misdiagnosis by non-dermatologists represents one of the biggest barriers to accurate and early diagnosis of HS.

"Almost all of the patients in the study were reported to have a diagnosis of an abscess or inflamed cyst or acne or cellulitis or MRSA [methicillin-resistant Staphylococcus aureus] or something like that," said Alok Vij, MD, of the Cleveland Clinic, who was not involved in the study. "Some people are just being mischaracterized as having an acute infectious disease rather than a chronic inflammatory disease."

The study also suggested that some patients delay seeking a diagnosis or care because of embarrassment, Vij told MedPage Today. HS arises in sensitive areas of the body that may be difficult to talk about or reveal to a clinician: the axilla, groin, inframammary fold, and anogenital areas.

"Patients don't know with whom to seek care, so they just end up going to the [emergency department]," he said. "A lot of the patients don't have health insurance, as HS unfortunately affects patients with skin of color to a greater degree than white patients."

Historically, dermatologists -- the medical specialists most familiar with HS -- have not been the first point of clinical contact for patients affected by the disease. Fortunately, the situation has begun to change over the past 2 or 3 years, at least from the perspective of Danny Del Campo, MD, of the Chicago Skin Clinic.

"The messaging for HS has improved, and I've been seeing a lot more patients in the milder stages, which is good because we can help prevent them from progressing as quickly or having long-term scarring," Del Campo told MedPage Today.

For a clinician familiar with HS, certain signs and symptoms point toward an HS diagnosis: localized pain, swelling, and tenderness of the affected area, as well as warmth to the touch in the affected area. Although those indicators can also overlap with a diagnosis of infection, said Vij.

Adding patient and lesion characteristics to the diagnostic workup can also help guide the diagnosis toward or away from HS. The "typical" patient is in middle age, more likely a woman, overweight or obese, and has an intertriginous site of involvement, said Del Campo. A classic distinguishing lesion of HS is two comedones close together and overlying a larger nodule or tract.

"The double comedone is not found in many other conditions, so just having two open, seemingly large pores over a larger nodule is a very specific sign," he said.

As the disease progresses, signs of more advanced disease, likely requiring surgery, begin to emerge, including nodules and abscesses with underlying tunneling, and scarring.

Arriving at an accurate diagnosis, and providing reassurance that HS can be treated, can provide the cornerstone for building trust with patients, particularly those who have seen multiple clinicians and obtained little satisfaction from the encounters. Building that trust can be the biggest challenge to successful management of HS, said Vij.

"I see a lot of patients who feel like they haven't been heard," he said. "They feel like they haven't been given a chance to get a good diagnosis, develop a good treatment plan, and develop a relationship with a provider. They've kind of bounced around from the [emergency department] to a primary care physician or to a general surgeon and back and forth without finding a real home."

"One of my biggest problems is building that trust with a patient who might feel like they've been burned or cast aside by the house of medicine," Vij noted. "Once that's been done, it makes the whole process a lot easier. They really engage with the treatment plan."

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