Young Hidradenitis Suppurativa Patients See Lags in Care

There's some room for improvement in diagnosing pediatric hidradenitis suppurativa (HS), researchers suggested.

In an international cross-sectional analysis of 481 patients diagnosed with HS, the average age of diagnosis came about 2 years after the average age of disease onset (14.4 and 12.5 years, respectively), according to Irene Lara-Corrales, MD, of the University of Toronto, and colleagues.

Among adolescents, the inflammatory skin condition most often presented with a cyst or abscess, accounting for about half of the first signs and symptoms, they stated in JAMA Dermatology.

The second and third most common initial symptoms of the debilitating disorder were pain and tenderness (25%), followed by papules and pustules (24%).

Delay in care for HS sufferers isn't isolated to pediatric patients, as there's a reported 7.2-year delay between symptom onset and diagnosis in adults, along with a high rate of undiagnosed and misdiagnosed cases.

"In either case, this significant interval highlights the importance of raising awareness of HS among other health care professionals, patients, and families," Lara-Corrales' group stated. "Delayed diagnosis of HS is likely to result in undertreatment and, as a consequence, disease progression and increased disability."

Joslyn Kirby, MD, MEd, and Andrea Zaenglein, MD, both of Penn State Hershey Medical Center in Pennsylvania, agreed: "This finding reminds us that we need to get the word out about HS to patients, parents and caregivers, and our colleagues who treat children and adolescents, such as those in pediatrics, family and community medicine, surgery, including plastics, general, and pediatric surgeons, and school nurse associations," they wrote in an accompanying editorial.

The editorialists underscored the importance of including pediatric patients in future HS research, including clinical trials.

"The condition makes too big an effect on their lives to leave them out of the work being done," they wrote, adding "Without formal clinical testing and drug approval for pediatric patients with HS, children will be denied access to effective and state-of- the-art care."

While these young patients were most commonly referred to a dermatologist by a pediatrician (45%), family physician (18%), or self-referred (11%), about half already had evidence of skin scarring by the time they had an initial dermatologic assessment.

At this initial assessment, only about 60% had their disease severity graded by Hurley staging. Among those who were graded, 47% fell into Hurley stage 1 while 45% fell into stage 2, with 8% falling into stage 3 severity. Only about a quarter of patients also had a bacterial skin swab culture performed, according to the authors.

As for treatment, topicals like clindamycin and benzoyl peroxide were most commonly prescribed to about 88% of patients. Systemic antibiotics -- most commonly doxycycline -- were prescribed to about 79% of patients.

The multicenter, retrospective electronic health records review revealed that about 85% of HS patients also had obesity and 29% were also diagnosed with acne vulgaris. A family history of HS, specifically among a first-degree relative, was fairly common, occurring in 41% of patients.

Looking at 328 of those with available follow-up information, about a quarter experienced either an emergency department visit or hospitalization due to HS. Complications were quite common for these pediatric patients, occurring in nearly 80% of cases, with the most commonly reported complications of scarring and contractures (80%), psychological distress (10%), and restricted movement (4%).

Few patients were able to achieve remission on therapy (14%), while about a third experienced persistent flares even while on treatment.

In a related JAMA Dermatology research letter, Lauren Orenstein, MD, of Emory University School of Medicine in Atlanta, and colleagues surveyed 50 board-certified dermatologists who treat HS.

While every physician surveyed stated that they either strongly agreed or agreed that pain impacts the quality of life in people with HS, nearly half said that current HS pain guidelines are sufficient.

Although 31 of the 50 physicians surveyed said that cognitive behavioral therapy and antidepressants are effective for treating this type of chronic pain, only about half said psychiatrists or psychologists are an integral part of HS pain management.

More than half of dermatologists surveyed listed their own lack of knowledge or experience in prescribing pain medications as the top barrier to managing HS pain. A vast majority of these providers also listed concerns about the habit-forming potential of medications as another barrier to managing patient pain.

"Even among HS specialists, knowledge gaps presented a common barrier to managing HS pain," Orenstein's group concluded. "Educating general dermatologists and specialists about pain management may empower them to better address skin pain and its association with the quality of life."