Abstract
Background
Hidradenitis suppurativa (HS) is a complex disease that is optimally managed with specialized care. Data on HS specialty clinics (HSSCs) are lacking.
Methods
HSSCs in the USA were identified on the HS Foundation website and analyzed for geographic location and clinic director demographics.
Results
We identified 29 HSSCs in 16 states, an increase from 22 in 2019. Thirty-four states currently lack a HSSC; the Mountain West and East South Central regions of the USA are particularly affected. Among HSSC directors, the majority (93.3%) are dermatologists, with slightly more women (53.3%) than men (46.7%). Most (86.7%) have an academic affiliation, and the majority (60%) graduated from residency <10 years ago. All directors are involved in research, and over half of HSSCs serve as HS clinical trial sites.
Conclusions
The number of HSSCs in the USA has been growing, yet there remains a dearth in certain regions. Given that HS is a disease with high unmet need and a rapidly evolving therapeutic landscape, we encourage the establishment of more HSSCs to improve access to specialized care.
Keywords: Hidradenitis suppurativa, Acne inversa, Specialty clinic, Medical management, Referral center
Introduction
Hidradenitis suppurativa (HS) is a complex disease that is best managed through multidisciplinary care [1, 2]. Regional HS specialty clinics (HSSCs) serve as referral centers for advanced care and are the driving forces for patient support and dissemination of disease awareness. Services vary from clinic to clinic but may include expert medical and surgical management, HS clinical trials, wound care, laser therapy, and support groups. HSSCs can also offer patient access to interdisciplinary care, including providers such as surgeons, dietitians, rheumatologists, obstetrician-gynecologists, urologists, pain management specialists, and mental health specialists. HSSC directors are dedicated to advancing HS care in their region. However, data regarding the landscape of HSSCs and characteristics of their directors are lacking. Herein, we characterize the distribution of HSSCs and demographics and professional merits of HSSC directors.
Methods
HSSCs were identified using the US HS Foundation (HSF) website (https://www.hs-foundation.org/hs-specialty-clinics/) in October 2020. The HSF is the leading HS organization in the USA through its education, research, and outreach efforts and serves as a uniting authority dedicated to advancing the field of HS. To be listed as an HSSC, providers apply through the HSF and describe treatments as well as referral services offered to patients, along with a recommendation from an HSF board member. These applications are reviewed by an HSF committee and approved by the HSF board. Clinic director demographics were extracted from the World Wide Web. Data regarding publication numbers and h-index, clinical trials, and NIH grant status were compiled using the SCOPUS, clinicaltrials.gov, and NIH RePORT databases, respectively.
Results
There are 29 HSSCs in 16 states and the District of Columbia (Fig. 1). In early 2019, there were 22 HSSCs in the USA (information obtained from HSF). Currently, 34 states lack a HSSC; many of these states are in the Mountain West and East South Central regions of the USA. Most HSSCs (23/29, 79.3%) are in a university setting. The majority of HSSC sites (17/29, 58.6%) are involved in HS clinical trials.
Fig. 1.
Location and number of HSSCs in the USA. As listed on the Hidradenitis Suppurativa Foundation website (October 2020). HSSCs, hidradenitis suppurativa specialty clinics.
Among HSSC directors, there are slightly more women than men (53.3 vs. 46.7%) (Table 1). The majority (28/30, 93.3%) are dermatologists, with 1 general surgeon and 1 rheumatologist. Most (26/30, 86.7%) have an academic affiliation, and of these, over half (14/26, 53.8%) hold junior faculty positions. The majority (18/30, 60%) are ≤10 years from graduating residency, with 30% (9/30) out ≤5 years. Almost one-fifth (5/26, 19.2%) of HSSC directors hold a residency program leadership position.
Table 1.
Demographics of HSSC directors in the USA*
| HSSC location (City, State) | |
|---|---|
| University of Arkansas for Medical Sciences (Little Rock, AR) | Washington University School of Medicine (St Louis, MO) |
| University of California, San Francisco (San Francisco, CA) | Montefiore Medical Center (Bronx, NY) |
| University of California, Los Angeles (Los Angeles, CA) | University of North Carolina (Chapel Hill, NC) |
| Sutter Medical Foundation (Sacramento, CA) | Duke School of Medicine (Durham, NC) |
| Howard University (Washington, DC) | Wake Forest Baptist Health (Winston-Salem, NC) |
| George Washington University (Washington, DC) | Hidradenitis Suppurativa Institute (Westlake, OH) |
| Resnik Skin Institute (Miami, FL) | Pennsylvania State University (Hershey, PA) |
| University of Miami (Miami, FL) | University of Pennsylvania (Philadelphia, PA) |
| The Emory Clinic (Atlanta, GA) | Thomas Jefferson University (Philadelphia, PA) |
| Medical Dermatology Specialists PC (Sandy Springs, GA) | Baylor Scott & White (Dallas, TX) |
| Cook County Health (Chicago, IL) | Bellaire Dermatology (Houston, TX) |
| Beth Israel Deaconess Medical Center (Boston, MA)^ | Mary Washington Hospital Center (Fredericksburg, VA) |
| Henry Ford Hospital (Detroit, MI) | Pacific Medical Centers (Seattle, WA) |
| Wayne State University (Dearborn, MI) | University of Washington (Seattle, WA) |
| University of Minnesota (Minneapolis, MN) |
| HSSC director demographics (N = 30) | N (%) |
|---|---|
| Gender | |
| Male | 14 (46.7) |
| Female | 16 (53.3) |
| Specialty | |
| Dermatology | 28 (93.3) |
| General surgery | 1 (3.3) |
| Rheumatology | 1 (3.3) |
| Academic affiliation | 26 (86.7) |
| HSSC in a university setting (n = 29)^ | 23 (79.3) |
| HSSC is a clinical trial site (n = 29)^ | 17 (58.6) |
| Academic rank (n = 26)& | |
| Clinical instructor | 1 (3.8) |
| Assistant professor | 13 (50.0) |
| Associate professor | 5 (19.2) |
| Professor | 6 (23.1) |
| Unspecified | 1 (3.8) |
| Residency Program Director (PD) or APD (n = 26)& | 5 (19.2) |
| Years since completing residency, mean ± SD (range)# | 12.6±11.0 (3–43) |
| 0–5 years | 9 (30) |
| 6–10 years | 9 (30) |
| 10+ years | 12 (40) |
| Publications, mean ± SD (range) | 56.7±66.2 (5–338) |
| 0–25 | 10 (33.3) |
| 25–50 | 7 (23.3) |
| 50–100 | 10 (33.3) |
| >100 | 3 (10.0) |
| H-index, mean ± SD (range) | 12.6±11.1 (2–56) |
| NIH HS-related grant awardee | 3 (10) |
HSSCs, hidradenitis suppurativa specialty clinics.
As listed on the Hidradenitis Suppurativa Foundation website (hs-foundation. org) in October 2020.
Beth Israel Deaconess Medical Center has 2 specialty clinic directors.
Academic rank and residency program director include only those with an academic affiliation.
Information extracted via search of the World Wide Web including department websites, the AAD directory, and Doximity.
Overall, HSSC directors are actively engaged in research, with all having published in the last year (2019–2020) and 86.7% (26/30) having published an HS-related article in the past year. The mean overall number of articles published per director is 56.7 (SD 66.2, range 5–338). Mean H-index among HSSC directors is 12.6 (SD 11.1, range 2–56). Ten percent (3/30) of HSSC directors have received NIH grants specifically for HS research.
Discussion
The number of HSSCs in the USA has been growing. However, there remains a dearth of HSSCs in many states, particularly in the Mountain West and East South Central regions. Our study highlights the need for increased HSSC coverage throughout the USA. Fragmented HS care and diagnostic delays contribute to poor outcomes [3, 4]. In the authors' experience, patients travel to neighboring states to seek care at HSSCs; having more HSSCs distributed throughout the USA can alleviate cost and travel burdens. The lack of HSSCs in noncontinental US states such as Hawaii and Alaska can be particularly burdensome for patients seeking access to a HSSC.
The majority of HSSC directors graduated residency ≤10 years ago, with about a third having graduated ≤5 years ago. This underscores that HS is a field attracting early-career clinicians and investigators who may be establishing their niche in dermatology. As with other complex and debilitating disorders, we need to continue to inspire young dermatologists to pursue careers dedicated to HS and to provide longitudinal mentorship and support. The HSF has developed a mentoring grant for providers interested in HS research and clinical care.
Study limitations include that demographic and publication data are based on accuracy of information retrieved from the World Wide Web, SCOPUS, and NIH RePORT database. HS has high unmet need and a rapidly evolving therapeutic landscape [5]. Encouraging the establishment of more HSSCs will improve nationwide access for patients with complex, recalcitrant disease.
Statement of Ethics
IRB review is not applicable as all information was obtained from publicly available data.
Conflict of Interest Statement
Jennifer Hsiao has served as an advisor for Novartis. Vivian Shi is on the board of directors for the Hidradenitis Suppurativa Foundation (HSF), is a stock shareholder of Learn Health, and has served as an advisory board member, investigator, and/or received research funding from Sanofi Genzyme, Regeneron, AbbVie, Eli Lilly, Novartis, SUN Pharma, LEO Pharma, Pfizer, Galderma, Menlo Therapeutics, Burt's Bees, GpSkin, the National Eczema Association, Global Parents for Eczema Research, the Foundation for Atopic Dermatitis, and Skin Actives Scientific. Martina Porter has served as a consultant and/or investigator for AbbVie, Eli Lilly, Novartis, Chemocentryx, Pfizer, Incyte/Trifecta, and UCB. Iltefat Hamzavi is the president of the HSF and has served as an advisory board member, investigator, and/or research funding from AbbVie, Pfizer Inc., Bayer, Lenicura, Incyte, UCB, HS Foundation, and Boehringer Ingelheim. Michelle Lowes is the vice president of the HSF and has served on the advisory boards for AbbVie, Janssen, and Viela Bio and consulted for Almirall, BSN, Incyte, Janssen, Kymera, and XBiotech. There were no incentives or transactions, financial or otherwise, relevant to this manuscript. Justine Seivright and Alyssa Thompson have no conflicts of interest.
Funding Sources
No funding was received for this study.
Author Contributions
All named authors met the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this manuscript and have given approval for submission.
Acknowledgments
The authors would like to thank all the HS specialty clinic directors for their dedication to the HS community. They also appreciate the help of Brent Hazelett, Executive Director of the Hidradenitis Suppurativa Foundation, for manuscript preparation. For information about the HS clinics or the mentoring grant, please contact hazelett@hs-foundation.org.
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