Helen H. Park,Isabella Toledo,Caitlyn Kellogg,Adriana Richmond,Carrie L. Vuong,Sijia Zhang,George K. Hightower
Reply to “A practical guide to starting a hidradenitis suppurativa specialty clinic”
Reply to “A practical guide to starting a hidradenitis suppurativa specialty clinic”

We are grateful to Shih et al, members of the Society for Pediatric Dermatology’s Virtual Journal Club, and others for engaging and advancing discussions on the needs of adolescent patients with hidradenitis suppurativa (HS). Bringing into focus the important work conducted within HS specialty clinics (HSSCs) further elucidates the need for greater collaboration between adult and pediatric specialists. Our work at Rady Children’s Hospital (RCH) has benefited directly from the advice and mentorship of Dr Chris Sayed and Dr Tara Jaleel, who led HSSCs at the University of North Carolina at Chapel Hill and Duke, respectively. With respect to bridging the divide between pediatric and adult HS care, one significant challenge to the approach outlined by Shih et al is how to support pediatric dermatologists who care for patients with HS but lack the institutional support and necessary resources to start and sustain a HSSC. Structural support and funding available to pediatric dermatologists, factual and perceived, are important practical considerations. We should anticipate that HSSCs will continue to model care for patients beyond their own walls, given the prohibitive cost for families of out-of-network care and the relatively limited geographic distribution of nationally recognized HSSCs. The intake form Shih et al provides is immensely useful. HSSC providers’ willingness to share their experiences and copies of intake forms used in their clinics was a catalyst for our work at RCH. However, it is important to note that the current intake forms/questionnaires (Figs 1 and 2) in use at RCH notably differ from those provided by Shih et al. We attribute these differences to the following: (1) our forms are designed at a 15-year-old reading level with minimal to no input from a parent or guardian (apart from family history), (2) our forms are reviewed by clinicians along with patient responses to the Teenager’s Quality of Life Index, and (3) we place a high priority on identifying patients with HS who are at risk for poor school performance. In future guides to starting an HSSC, consideration should be given to address the use of adolescent-specific forms/questionnaires. Since the publication of Toledo et al, we have identified several other projects that currently fall outside of what is often seen as practical, but one day might prove essential to the work of HSCCs and young adult-centered models of HS care. These efforts include the use of narrative medicine to empower patients and trainees to better care for patients with HS, neighborhood-based analysis to better understand how structural inequalities may impact HS care, and emergency department/urgent care-specific referral system aimed at reducing the use of emergency care resources and improving care for patients with HS.

None disclosed.