‘Nobody else to see’: Families trek hundreds of miles for pediatric rheumatology visits
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“Your foot is very swollen. Like, there’s definitely something really wrong with your foot.”
That is what 17-year-old Estelle LeBoeuf remembers her teammates saying years ago, when, at just 9 years of age and deeply involved in gymnastics, she began to demonstrate symptoms. By the time she finally received a diagnosis — juvenile rheumatoid arthritis — doctors had put her into boots and casts so many times that she ultimately lost a degree of foot mobility, which she has yet to fully regain.
However, even after the clarity of diagnosis, her troubles were only beginning. Her family lives in Louisiana, one of seven states that does not have a single full-time, board-certified pediatric rheumatologist. Hitting that roadblock was “one of the most difficult parts” of her journey with juvenile RA, Estelle told Healio.
“It’s like, once you think you’re on the right track, then you have nobody else to see,” said her father, Luke LeBoeuf.
Eventually they settled on a provider in Houston, Texas — 4 hours away by car but the closest place with the specialist care Estelle needed. They have been making those 500-mile round trips from Baton Rouge for years ever since.
Amid an overall rheumatology workforce shortage, the drought of pediatric subspecialists is especially acute. Children with rheumatic diseases travel 57 miles on average to see a pediatric rheumatologist, according to the Arthritis Foundation.
The problem is expected to worsen before it gets better, as pediatric rheumatology fellowship slots go unfilled year after year. This year, 20 slots out of 52 across the U.S. failed to find matches.
“We’re very, very short,” Terry L. Moore, MD, director of adult and pediatric rheumatology at the Saint Louis University School of Medicine, said of the field. “In the next 5 years, we’re going to be even shorter.”
‘Why can’t you just go to a doctor here?’
In the beginning, crossing state lines for her appointments was “really hard,” Estelle said. Doing her schoolwork in the car could be particularly frustrating.
“When [my condition] was really kind of out of control, we'd have to go to Houston a lot,” she said. “I’d have to miss school a lot. Sometimes they'd have me stay the night, so I'd have to miss a couple of days.”
Estelle said she found it “kind of weird” having to explain to her classmates that she would be absent because her doctor was more than 250 miles away in Houston.
“It’s kind of hard to explain to a lot of people,” she said. “They’re like, ‘Why can’t you just go to a doctor here?’”
The LeBoeuf family briefly considered moving closer to Houston, but with two other daughters, they opted to “provide the best care for Estelle without disrupting the entire family,” Luke said. He added that Houston is “right in that sweet spot” of being far, but not prohibitively so. If it was farther away, “that might be a different story.”
Typically, the LeBoeufs make their round trip to Houston and back in a single day to minimize any impact on their regular lives. Effects on Estelle’s social life have been minimal, she said, but her ability to participate in gymnastics was sometimes at risk.
“It affected my practice schedule and me missing gym,” she said. “Sometimes there’s a certain number of hours a week that we have to go [to gym] in order to do competitions.”
Treating patients who trek long distances can pose challenges to providers, as well. Patients with juvenile arthritis often need laboratory tests every few weeks, and it is “not always the easiest thing to get the results back” from distant hospitals, Moore said. His group tries to steer patients toward laboratories that synchronize well with their computer systems, but it can be difficult.
“If you need certain X-rays and things periodically, and that can be a problem,” Moore said.
‘This is my dream’
Although the last of Louisiana’s pediatric rheumatology workforce has dried up, other states are moving in the opposite direction. For example, Montana just gained its first full-time pediatric rheumatologist: Julie Campbell, MD, MHA, at Logan Health Specialty Care-Missoula.
Campbell wasn’t born in Montana, but she wishes she was. Her family moved there when she was just 8 weeks old, and it was “always the plan” for her to return from medical school at the University of Washington, and her fellowship at Seattle Children’s Hospital, back home to Montana, where she sometimes treats patients who go to her former elementary school.
“I love my job,” she told Healio. “This is my dream, to be able to do exactly what I want in the place where I want to live.”
Since joining Logan Health in October, Campbell has treated approximately 350 children, some of whom hail from as far away as Buffalo, Wyoming — 7 hours by car. She said she has encountered “far more patients” who had never been to a rheumatologist before than she expected. For particularly far-flung patients, she allows visits to extend as long as an hour and a half, depending on their needs.
“I do try to really make sure we’re addressing all of their questions, and make sure we have a really solid plan in place, so that they don’t have to come back sooner than they need to,” Campbell said.
She draws patients from across northern Idaho, all of Montana and parts of Wyoming, and spends 3 days every month driving across much of the western part of Montana, reducing the distance for patients in remote towns, reservation communities and military families that might not otherwise reach her.
“I’m probably traveling the most out of the pediatric rheumatologists right now in the country,” she said.
Being the only pediatric rheumatologist in the state calls for Campbell to think more creatively, act more independently and requires one to “be a little brave,” she added. However, it is a challenge she welcomes.
“I hope more people realize that it is doable,” she said. “You can create your own path and live in a place you really want to live.”
Can telehealth help?
At first, the LeBoeufs made their journey to Houston once a month. Over time, those appointments lessened to about two per year — one in-person and one telehealth appointment.
The virtual visits help cut down on travel but cannot completely replace the in-person experience, Estelle said. If her condition is acting up, she would “much rather” be seen in the clinic.
“Over Zoom, they can only really ask me questions,” she said. “But whenever they’re moving my joints, I think it’s easier for them to see how my joints are doing and how I’m responding to the medication.”
According to Moore, telehealth is only a partial solution to the problem of long travel times for pediatric rheumatology visits. Evaluating the hands and feet of children with juvenile arthritis is “very difficult on telehealth at this point,” he said. His group “did quite a bit” of telehealth during the COVID-19 pandemic, but since then, they have tried to return to in-person appointments as much as possible, he added.
Campbell agreed physical exams reveal “the subtleties” in ways that virtual visits cannot. Still, while she prefers to see patients in person at least once per year, Campbell said she sees many benefits to virtual visits.
“You can get a lot of information from just watching kids move around their house,” she said. “Kids are often more relaxed and open up a little bit more over video visits.”
Patients can also be checked on “so much more often” using telehealth, she said, adding that it can be easier to talk through information with a parent while their child plays at home compared with them being “trapped in a clinic room.”
“I don’t think there’s many times where I would say it’s not helpful,” Campbell said. “I certainly plan on using it as long as they let me.”
Moore acknowledged telehealth has a place as a stopgap measure, at least. For children with little or no access to pediatric rheumatologists, “we’re going to have to do some things like that to at least get them seen periodically,” he said.
Looking forward
Estelle is now on the verge of graduating high school. For her, this means more than just choosing a college. It also means leaving the pediatric scarcity behind and transitioning to a new, adult-focused rheumatologist.
With her arthritis symptoms manageable these days, Estelle said she usually overlooks the continuity of her care as a component of the search.
“It kind of slips my mind,” she said.
The easing of her condition has given her the space to excel in gymnastics, where she has advanced to Level 10, the highest level, and is eligible for recruitment into college programs, a goal she has always wanted to reach.
For younger patients, the struggle continues.
Moore and Campbell both highlighted Ronald McDonald Houses near their respective institutions, where families of pediatric patients can stay overnight in exchange for an optional donation. Moore also said that, in the past, the state of Missouri has offered financial assistance to families traveling from as far away as southern Illinois.
“That money has kind of dwindled down over the last couple of years,” he said. “However, that might be something we could reestablish in the future.”
As for the underlying shortage of providers, Moore said possible solutions could include offering higher salaries and providing financial incentives, such as student loan repayments, for those entering the field.
Years of advocacy recently culminated in the launch of the Pediatric Specialty Loan Repayment Program through the HHS’ Health Resources and Services Administration. The program, which received $15 million in funding last year, offers pediatric subspecialists up to $100,000 in exchange for 3 years of service in an underserved area.
Campbell said she hopes that “people like me getting out into communities” will draw attention to pediatric rheumatology. She added that she has been shadowed by several medical students and graduates, a valuable experience for them even if they don’t necessarily want to become a pediatric rheumatologist.
“Getting a sense that ‘these diseases exist, and this is what I should be looking for,’ is really important for making sure that kids with autoimmune disease get the care they need, and knowing the first steps to helping them get there,” Campbell said.
She acknowledged that the reality of the shortage “can seem a little overwhelming” to anyone considering a path in pediatric rheumatology, adding that it may seem like they are signing up to “get slammed” for the rest of their career.
“Sometimes it’s true,” Campbell said. “But we’ve got to start somewhere. Also, the community is so strong and so, so caring about one another, in addition to their patients.
“It’s pretty uplifting.”
References:
Addressing the pediatric rheumatology shortage. https://www.arthritis.org/advocate/federal/addressing-the-pediatric-rheumatology-shortage. Accessed April 16, 2024.
HHS announces new $15 million loan repayment program to strengthen the pediatric health care workforce. https://www.hhs.gov/about/news/2023/06/09/hhs-announces-new-15-million-loan-repayment-program-strengthen-pediatric-health-care-workforce.html. Published June 9, 2023. Accessed April 17, 2024.
Open Now: New federal loan repayment program for pediatric rheumatologists. https://www.the-rheumatologist.org/article/open-now-new-federal-loan-repayment-program-for-pediatric-rheumatologists. Published June 16, 2023. Accessed April 18, 2023.
For more information:
Julie Campbell, MD, MHA, can be reached at jcampbell@logan.org.
Terry L. Moore, MD, can be reached at terry.moore@health.slu.edu.
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