Onsite With Orlando Health Arnold Palmer Hospital for Children: Pediatric Rheumatology Care Built From Scratch
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With more than 300,000 children with arthritis and other rheumatic conditions across the United States, and fewer than 350 pediatric rheumatologists to treat them, Monica L. Friedman, DO, of Orlando Health Arnold Palmer Hospital for Children, is on the front lines of the growing rheumatology shortage.
Joining the hospital in March 2019 as its first-ever chief of pediatric rheumatology, Friedman was tasked with building the facility’s rheumatology department from the ground up. Together with a front desk assistant, a nurse and a licensed clinical social worker, Friedman and her team provide care for 12 to 16 juvenile patients each week. Between that and her other daily responsibilities providing hospital consultations as well as following up on lab results and phone calls with patients, Friedman said managing her schedule can quickly become a “balancing act.”
“There are only about 300 to 400 of us in the whole country,” Friedman told Healio Rheumatology. “There is one other big institution here in Orlando, and there was a rheumatologist here seeing patients once per month for a long time, so we are working together, in a sense, on covering the area.”
According to Friedman, the looming rheumatology shortage — particularly with regard to pediatric care — is partly due to the fact that not many residents are exposed to the subspecialty early enough. She added that rheumatologists need to be better advocates for themselves and their specialty if current trends are to be reversed.
“It’s a combination of the need for rheumatologists — which, there is always a need, but there really needs to be a large population of patients to make a successful practice — and the interest in rheumatology,” she said. “The interest in pediatric rheumatology is low. My interest was sparked in medical school and has persisted, but residents usually learn about pediatric rheumatology while doing their rotations. What we are and what we do is not something that is well known in the world; we need to do better in getting the word out.”
A drastic, nationwide personnel shortage is far from the only challenge unique to pediatric rheumatology. Friedman said she not only cares for her patients but often also their parents or guardians. For children, rheumatic diseases can mean missed school, stress and social anxiety, all while juggling multiple prescriptions and physician appointments.
For family members struggling to make those appointments and manage their child’s medicine, the stress and anxiety can be even greater, Friedman said.
“I take care of patients with chronic illnesses and many times it becomes a burden on not only the patient but also the family,” she said. “I think a lot of parents have greater anxiety about the disease processes than the children. Frequent office visits, taking multiple medications, side effects from medications, dealing with the psychosocial aspects, missing school — they all take a toll. There are many things I deal with that are not just related to the physical aspects of the disease and the medications — it’s the whole well-being of the patient.”
“These are school-aged children, so a lot of them are missing school because of their disease process, or because pain takes a toll on their schoolwork,” she added. “They can end up homeschooled, or failing out of classes, so it can take a toll on them. We try to work with the schools and the families to make sure that they can live a balanced life in the medical and social world.”
And that, Friedman said, is where having a licensed clinical social worker is crucial.
When building her new practice at the Orlando Health Arnold Palmer Hospital for Children, Friedman said she stressed the importance of having someone on staff who could focus on school issues, anxiety and mental well-being. Her lobbying ultimately paid off.
“That is the beauty of starting your own department — you get to ask for what you want,” Friedman said. “I had a social worker at my prior practice — we were in a very large group — and it was very helpful, so I explained the need for one here and was provided one.”
“Our social worker is also a mental health specialist, so she is able to counsel the families and provide sources outside of Orlando Health Arnold Palmer Hospital for Children, which is helpful for me, seeing as I just started working here and she has been here for several years,” she added. “She is able to help with school issues if there is a need for Individualized Education Program, or anything like that. She provides an incredibly solid resource for families if they need it.” – by Jason Laday
