Pediatric dermatology toolbox
Advocacy groups and innovators provide key resources for patients and physicians — learn where to get help.
By Emily Margosian, Assistant Editor, February 1, 2024
Pediatric dermatology care is in demand. Studies estimate that 10-30% of pediatric primary care visits include a skin-related problem. However, historically, pediatricians have struggled to diagnose dermatologic issues with the same accuracy as trained dermatologists.
To meet this growing need, pediatric dermatology was officially recognized as a subspecialty of the American Board of Dermatology (ABD) in 2000.
However, demand continues to outpace supply. Pediatric dermatologists account for only 1.5% of the specialty, and many states face a shortage of pediatric dermatologists and available pediatric dermatology care.
While data indicate that the pediatric dermatologist workforce is slowly growing, in the meantime, pediatric dermatologists and their patients can take advantage of a variety of resources and support from advocacy groups and innovators in the field.
Clinical and patient education resources
For nearly 50 years, the Society for Pediatric Dermatology has been supporting dermatologists and their smallest patients. “It was recognized there was a real need for sub-specialty representation within the field of dermatology,” said Sheilagh Maguiness, MD, FAAD, president of the Society for Pediatric Dermatology (SPD). “We are the only national organization in the U.S. dedicated to promoting and advancing the field of pediatric dermatology. Our objectives are to advance education, research, advocacy, and care for patients.”
One way the organization achieves these goals is through a robust offering of patient and physician-facing clinical resources, said Craig Burkhart, MD, MPH, MSBS, FAAD, a pediatric dermatologist in private practice in North Carolina. “They provide a list of patient advocacy organizations for different skin conditions. I work with the SPD to update the list every year,” he said.
Access the SPD’s list of patient advocacy organizations.
According to Dr. Maguiness, one of SPD’s greatest contributions is an extensive series of handouts on common skin conditions seen in children and teens, which have been translated into multiple languages.
“They’re not only for patients and families, but also primary care doctors, pediatricians, and general dermatologists who might see kids,” she said. “As many are aware, pediatric dermatology has a workforce shortage. We’re hoping to temporarily bridge that gap by providing education for different types of pediatric skin disease to everyone free of charge, in a format that’s easy to disseminate and easy to include in a medical record. All these handouts are peer-reviewed and vetted by an expert in that area before they’re published.”
AAD pediatric dermatology resources
The AAD also offers educational resources for pediatric dermatologists and their patients. These include:
Resources on how to care for common childhood skin issues, such as minor injuries, poison ivy, and more.
As many pediatric dermatologists know, often the best resource when confronting a tough case is a colleague’s expertise. “When we come across challenging cases, we have our handy textbooks; we have online resources; we can use Google or other search engines to find information. However, more and more, there is a glut of information to parse through and sometimes it’s hard to make sense of what’s reasonable or what’s most likely,” said Albert Yan, MD, FAAP, FAAD, dermatologist and professor of pediatrics at Children’s Hospital of Philadelphia. “What most of us have relied on is our colleagues.”
In 2022, Dr. Yan launched Edvyce, a private discussion platform for pediatric dermatologists and other physicians who see pediatric dermatology cases. “I wanted to figure out a way to ‘app-ify’ this whole process so you can quickly reach a lot of people all at once, and crowdsource questions within a private, encrypted community so you can trust the information you’re getting,” he said. “All users are verified medical professionals. We use NPI numbers, referrals from existing members, and have explicit terms of service about who can join and participate. All information provided is de-identified, which helps make sure users are HIPAA-compliant.”
According to Dr. Yan, the platform currently has approximately 670 registered users, with 250 cases posted. “Pediatric dermatologists make up the bulk of our membership, in addition to some general dermatologists, a small number of pediatricians, and pediatric subspecialists. Users can move into smaller communities within the app depending on what their society affiliations are.”
Not all discussions are strictly case-based, said Dr. Yan. “We also see discussion of practice-based issues as well. For example, do you wear white coats in your practice, and what are the pros and cons of doing that when you’re working with kids?”
While the app is invitation-only, users can request access. “We ask for some basic information to verify who you are,” explained Dr. Yan. “It certainly helps if you mention who you were referred by, so that we can vet any connections you have with our existing members and expedite that process.”
Other clinical resources
For families dealing with trichotillomania or other body-focused repetitive behaviors, several organizations offer support, according to Dr. Burkhart. Some resources include:
Dr. Burkhart also recommends the following resources for addressing a variety of other concerns in pediatric dermatology.
Pediatric dermatologists who see patients with albinism can also benefit from resources offered by Positive Exposure, an organization that uses visual arts to present the humanity and dignity of individuals living with genetic, physical, behavioral, and intellectual differences from albinism. “They have much better clinical images to show patients and students than the typical textbook pictures, because they show you that these are real people with real lives,” said Dr. Burkhart.
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For many pediatric dermatology patients, their families, and the dermatologists who care for them, available treatment options are often limited, with the pace of research too slow.
To help address this need, the Pediatric Dermatology Research Alliance (PeDRA) was formed in 2012 to further promote active research in the field of pediatric dermatology. “Our mission is to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease,” said PeDRA President Anna Bruckner, MD, FAAD. “Several years ago, there was a realization within the pediatric dermatology community that if we really wanted to advance the subspecialty, we needed to encourage collaborative research.”
“There are a lot of ways we can work with organizations that recognize there’s a gap in what we understand about skin diseases that disproportionately impact children through co-funding and offering grants that would help to advance the research in those areas.”
To achieve this, PeDRA offers a robust grant program, according to Dr. Bruckner. “You do not need to be a PeDRA member to apply for grant funding. The main requirement for financial support is that you are focusing on a topic that’s relevant to pediatric dermatology,” she explained. “We’ve been working hard to develop partnerships with patient advocacy organizations to focus on areas of unmet need. For example, we just launched a hidradenitis suppurativa pilot grant program. We’ve also partnered with the National Eczema Association and the National Alopecia Areata Foundation. There are a lot of ways we can work with organizations that recognize there’s a gap in what we understand about skin diseases that disproportionately impact children through co-funding and offering grants that would help to advance the research in those areas.”
“One of the unique things about PeDRA is that we’ve tried to be very deliberate in developing partnerships with patient advocacy organizations. Many of these groups are part of our patient advisory committee. Leaders from these organizations attend our annual conference, and we develop education that’s very specific to them in terms of how they can amplify what they are doing by also getting their patients involved with research,” said Dr. Bruckner. “Ultimately, we all want to see better treatments for patients. We are trying to give patient advocacy groups an equal seat at the table as we’re moving research forward.”
PeDRA also offers support for pediatric dermatology patients and their families, including educational resources, assistance finding clinical trials, and a list of advocacy support groups.
“We have a membership category within PeDRA called community membership, which is for patients and families specifically,” said Michael Siegel, PhD, executive director of PeDRA. “As a community member, they can connect with us, know who the clinician scientists are, and get involved with research. We also have great relationships with nearly every patient advocacy group and are very happy to send them to the right place to get that kind of support.”
In a perfect world, a dermatologist would diagnose their patient’s condition, prescribe a therapy, and the patient would receive treatment. However, as many pediatric dermatologists know, reality is often not so simple.
“I hunker down and get in fightin’ mode,” said Andrea Zaenglein, MD, FAAD, professor of dermatology and pediatric dermatology at Penn State College of Medicine in a previous DermWorld article. “You may have to appeal three or four times, and some insurance companies have restrictions on how often you can appeal within a particular time period.”
For members struggling with coverage denials and prior authorization, the Academy has resources that can help. The AADA Practice Management Center offers members a variety of resources related to coverage. Key resources include:
Prior authorization letter tool: The Academy has created a customizable, clinically specific tool to allow your practice to easily generate individualized prior authorization appeal letters.
Prior authorization workflow template: See an example of a prior authorization workflow that goes through a complete pathway, including clinical staff, administrative staff, insurance provider, and patient. Learn more about how to set up an efficient process for your practice.
Staff access to Practice Management Center resources: As a member benefit, AAD members can provide their office staff access to password-protected content under the Practice Management tab. Access includes: the Coding Resource Center, prior authorization templates, MIPS reporting, and other helpful information.
Additional prior authorization resources: Access a full spectrum of resources for physicians, practice staff, and patients. Resources include prior authorization guidelines for staff, troubleshooting for patients, software recommendations that may help fast-track the prior authorization process, and more.
Need help appealing an insurance denial? Visit the Academy’s Private Payer Resource Center for private payer policy updates, a contact form to get help from Academy practice management staff, and an appeal letter generator tool.
“My favorite thing is when I get a win,” Dr. Zaenglein said. “I need to go to battle. You’ve got to do it for your patients. I wish it was easier, but it’s not.”
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Expanding the pediatric dermatology pipeline
While the pediatric dermatologist workforce is slowly increasing, several advocacy groups have taken action to help promote subspecialty growth.
“The SPD is really about supporting its membership through a lot of other ways beyond patient education,” said Dr. Maguiness. “Part of that is our society’s work to expand our reach and visibility to get more interest in pediatric dermatology as a career and as a fellowship, because we see the shortage in our workforce.”
The SPD now offers a fellowship matching program for trainees interested in pediatric dermatology. “Sometimes people don’t have a pediatric dermatologist in their training program and might not have enough exposure to decide whether they want to choose it as a career,” said Dr. Maguiness. “We’re really trying to improve our pipeline.”
The SPD is also working to move the needle in terms of compensation for pediatric dermatologists. “Pediatric dermatologists have always needed fair representation in terms of compensation,” said Dr. Maguiness. “We have a committee dedicated to this issue and put out a compensation survey to pediatric dermatologists so we can keep up-to-date with what fair compensation is, to help people negotiate with their institutions.”
To help strengthen the pediatric dermatology workforce, PeDRA also offers a grants and fellowships program targeted at young investigators. “One of the things I’m most proud of is that we’ve focused a lot on early investigators,” said Dr. Bruckner. “We’re really trying to give them the tools they need to be successful through skill building and financial support.”
“We’re very proud of our grants and fellowships programs,” agreed Siegel. “This is our second year of what’s called the Emerging Investigator Research Grant Program. It involves short-term mentored research opportunities for medical students or pediatric residents. The idea is to reach people who wouldn’t otherwise easily have access to training that’s necessary to pursue a career in dermatology. We’re hoping to provide opportunities to more people so they can actually get in the funnel to match in dermatology, and then hopefully pursue a career in pediatric dermatology with a focus on research.”