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Stories for Reprint
Pediatric Rheumatologists Shortage Strains System, Affects Patients
By Ekaterina Pesheva
When 6-year-old Logan Breedlove of Springfield, Mo., developed mysterious symptoms several years ago, none of the doctors who saw him knew what to make of them. The boy complained of pains and aches in his joints and had intermittent fever. For more than two weeks, physicians tried unsuccessfully to pinpoint the cause of the symptoms. A battery of tests, including blood work, MRI, X-rays and bone scans, showed nothing.
"We would go to one doctor and he'd tell us it was just a virus," recalls Logan's mom, Leslie Breedlove. "We'd go to another one, and he'd tell us it was growing pains. Finally, one pediatrician said, 'Something is wrong, and I have no idea what it is, so I am sending you to Columbia.'"
In Columbia, Mo., a town nearly four hours northeast of Springfield, an infectious disease specialist took a quick look at Logan and knew exactly what the problem was.
"Logan got diagnosed in five minutes," Breedlove says. "Dr. Cooperstone just took one look at his legs and said 'See these spider veins - that's rheumatic fever.'"
Logan had developed rheumatic fever as a result of an inactive strep infection that produced none of the traditional strep throat signs. This is probably why none of the doctors even thought of ordering a throat culture.
In two weeks, the stealth infection had damaged Logan's joints and a heart valve.
Almost four years later, the question that still haunts the Breedloves is whether some of the damage could have been prevented had their son been able to see a pediatric rheumatologist earlier.
In Springfield, a town of 450,000 people, there is definitely a demand for specialists of all kinds.
"We hardly have any specialists down here," Breedlove says. "My youngest one has to see a gastroenterologist right now, and we have to wait for a doctor from Kansas City to come to Springfield."
The town doesn't have a pediatric rheumatologist. Instead, a semi-retired doctor from Columbia has office hours there once a month.
In fact, pediatric rheumatologists, a subspecialty of doctors who treat children with rheumatologic disorders, are in short supply throughout the country. There are some 280,000 children in the United States diagnosed with juvenile arthritis, and a mere 192 board certified pediatric rheumatologists to care for them, according the American Board of Pediatrics. Compounding the shortage of pediatric rheumatologists is their disproportionate distribution. Most of them flock to large metropolitan areas, which hampers access to care for those who live in smaller towns or rural regions. Eleven states have no pediatric rheumatologists are: Alaska, Arizona, Idaho, Maine, Nevada, New Hampshire, North Dakota, South Dakota, Rhode Island, West Virginia and Wyoming.
The shortage of pediatric rheumatologists is a complex phenomenon with causes that go beyond economics, says Andrew White, M.D., of St. Louis Children's Hospital, and one of six pediatric rheumatologists in St. Louis.
"First of all, it's a relatively new subspecialty," White explains. "Twenty years ago, there were no pediatric rheumatologists around, or three or four at the most. Secondly, the diseases we see are very rare, so there is no perception of need for pediatric rheumatologists,."
Because rheumatologic disorders in children occur rarely, medical students don't get exposed to them while in training, White says. Last but not least, pediatric rheumatologists don't make a lot of money, compared to other specialties that involve procedures, such as surgery or dermatology.
Also, obtaining a certification in pediatric rheumatology takes another three years on top of training in pediatrics, so often doctors are 36 years old by the time they get their first job, White continues.
Because of the short supply of specialists, other doctors end up absorbing the demand for care, which could affect the quality of care. Several studies have estimated that 60 percent of children with rheumatoid arthritis are seen by adult rheumatologists.
"The problem is that a lot of children end up being seen by adult rheumatologists, who have no training in pediatrics," White says. "This is crucial because there are a lot of diseases that children get that adults don't get, and adult rheumatologists don't understand child development as well. For example, if a child isn't walking by 15 months of age is it because of rheumatoid arthritis or because of a hundred other things?"
Lack of access to specialists can also lead to misdiagnosis.
"Many patients who have pain syndromes and not a primary rheumatic disease are inappropriately diagnosed and given medications they do not need," explains Michael Henrickson, M.D., chair of the Rheumatology Unit of the American Academy of Pediatrics. "These problems are expansive."
Delayed or inadequate care now will lead to more care and expenses in the future.
"Since arthritis is the leading cause of disability in the U. S., it is imperative that we make a difference," Henrickson says. "This begins with children and adolescents, in raising a new generation that will not be a debt burden to society because of their illness and unemployable status."
Arthritis and related diseases sap the U. S. economy of $65 billion a year in direct and indirect cost.
A bill recently introduced in Congress may help bridge the gap between demand and supply of pediatric rheumatologists. If passed, the Arthritis Act, among other things, would funnel more federal dollars to create career incentives for medical students interested in specializing in pediatric rheumatology.
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