Hidradenitis suppurativa (HS) is a chronic skin condition that manifests as painful, inflammatory papules and cystic nodules, draining sinus tracts and scarring, typically in axillary, genitofemoral, perianal, inguinal, and infra-mammary regions. Despite HS being primarily a dermatologic condition, patients with HS may go to see a number of different physicians for their care including primary care physicians, gynecologists, urologists, plastic surgeons, etc. depending on the severity of their condition, responsiveness to treatment, and areas affected. In addition, patients with HS may also be repeatedly seen and treated by emergency care providers when they have a flare of their skin condition, often receiving a short-term treatment like incision and drainage or a short courses of oral antibiotics. HS can be managed medically and surgically, however, in patients with severe HS who are not good surgical candidates, dermatologists play an important role in comprehensive medical management of the disease with systemic agents like biologics and good wound care. It is also important to note that many HS patients may need mental health care as well, as they can have psychological outcomes such as decreased feelings of self-worth, embarrassment, or worsening of underlying depression or anxiety.
Our project aims to evaluate which providers diagnose and treat hidradenitis suppurativa patients at UCLA, a large academic medical center with providers across multiple medical specialties. We also gathered data on whether patients are utilizing the hidradenitis suppurativa specialty clinic at UCLA. Finally, we looked for psychological comorbidities such as depression and anxiety in HS patients.
We performed a chart review in UCLA’s electronic health record database, CareConnect, of all patients with a diagnosis of hidradenitis suppurativa using the ICD-9 and ICD-10 code for hidradenitis suppurativa. We evaluated charts to determine which medical specialty provider made the HS diagnosis (if diagnosed at UCLA), which types of medical providers each patient sees for their HS, and whether patients have been seen in UCLA’s hidradenitis suppurativa specialty clinic. As a secondary study query, we also looked for the presence of psychiatric co-morbidities like depression and anxiety among HS patients.
1041 patients in the UCLA health system have the diagnosis of hidradenitis suppurativa in their electronic medical record as of April 2018. For this preliminary data presentation, information from 450 patients is being evaluated. Of these 450 patients, 65% have seen an internal medicine provider at least once for their HS treatment, 52% dermatology, 12% general surgery, 5% plastic surgery, 1% urology, and of female patients evaluated, 13% have seen an OB-GYN at least once for their HS treatment. 10% of patients evaluated have been to the emergency department at least once for their HS treatment, and 7% have been seen at urgent care at least once.
Only 18% of HS patients have been seen in the hidradenitis suppurativa clinic at UCLA.
In terms of the main provider of HS care, responsible for coordinating HS care and managing HS medication and treatment, most patients have a dermatologist as the central provider in their care (190 patients), followed by the primary care provider (151 patients). There was no main provider coordinating HS care in 38 patients.
Finally, in terms of psychiatric comorbidities, of the 450 patients analyzed, 108 also have a diagnosis of depression and 92 have a diagnosis of anxiety.
The results of this preliminary data review highlight several treatment patterns in hidradenitis suppurativa care. Most notably, there is an underutilization of the HS clinic at UCLA, which could be improved in the future by spreading awareness amongst primary care and other specialties about the availability of this clinic as a resource that provides comprehensive care for HS patients. Additionally, HS has historically been referred to as an orphan disease, because patients often bounce around from one provider to the next to receive care, without any specialty really taking ownership of the disease. However, dermatologists with their specialized knowledge of wound care, systemic agents like biologics used to treat skin diseases, and also surgical skills, are certainly prime candidates to take ownership of this disease. These results showing the frequent involvement of dermatologists in HS care and especially as the “main provider” in HS treatment support the notion that HS should be primarily considered a dermatologic condition, and training of dermatology residents should absolutely provide exposure to diagnosis and management of hidradenitis suppurativa. Finally, the prevalence of anxiety and depression amongst hidradenitis suppurativa patients is notably high, demonstrating the need for providers who take care of HS patients and assess their patients’ mental well-being and the need for mental health resources to be allocated to this population.