Brian Maranan Pineda
When Jaime Greathouse's family moved to the Detroit area two years ago, she knew that she'd eventually need to find a dermatologist for her sons. Since birth, 4-year-old Sam and 3-year-old Whit had suffered periodically from itchy bouts of eczema. Sure enough, shortly after they had settled into their new home in Shelby Township, Whit developed a bad rash, and his prescription for topical cream had expired. Greathouse phoned a pediatric dermatologist two miles away for an appointment, but he was booked solid for six weeks. "The rash probably wouldn't have lasted long if we'd started treating it right away, but by the time we had our appointment, Whit was bleeding in several places and covered in painful red bumps," she says. What's more, Sam had started breaking out too, so she brought both boys to the office visit, hoping to get two prescriptions. However, the doctor insisted that Sam couldn't be treated without his own appointment -- in six more weeks. Frustrated, Greathouse found another dermatologist an hour away who could see Sam in several days. When they arrived after battling traffic, the waiting room was packed. "I had to sit for an hour with the boys, whose nap schedules were disrupted because the whole trip took such a major chunk out of the day."
Welcome to the world of specialty care for kids. Whether your child needs to see a dermatologist, a gastroenterologist, or any other pediatrician who has had additional training in the unique aspects of children's health conditions, you're likely to face long waits, long drives, or both. Nationwide, there is a serious shortage of pediatric specialists -- officially known as subspecialists because pediatrics itself is a medical specialty -- and one recent national report concluded that the number of physicians practicing in every one of the 31 subspecialties for kids is hazardously low. "The ratio of pediatric subspecialists to children in almost all fields is shocking," says Peggy McManus, who led the report as codirector of the Maternal and Child Health Policy Research Center.
If you're worried about your child who has diabetes or a growth problem, for example, and needs the care of a pediatric endocrinologist, data shows that there are only 989 in the entire country. "That's one for every 81,000 children," says McManus. You'll have an even harder time finding doctors in fields such as child psychiatry, developmental and behavioral pediatrics, rheumatology, and neurology, according to a survey by the American Academy of Pediatrics (AAP). Hospitals have just as much trouble hiring specialists, finds the latest research from the National Association of Children's Hospitals and Related Institutions. "We haven't had a pediatric neurologist for six years," says Bonna Benjamin, M.D., professor and regional chair of pediatrics at Texas Tech University Health Science Center, in Amarillo.
The situation is most dire in rural areas and small cities with no children's hospital (there are about 250 such hospitals in the U.S.). Families in large, sparsely populated states often must travel hundreds of miles across state lines. Studies have found that when parents have to go more than 50 miles for a pediatric expert, they often bring their child to an adult specialist closer to home instead. "However, children are not miniature adults," says Beth Pletcher, M.D., chair of the AAP's Committee on Pediatric Workforce. "It's important for an experienced pediatric subspecialist to manage the care of a child who has a significant illness."
The Search is On
Whether parents need to find a cardiologist to investigate a heart murmur or a pulmonologist to get their child's asthma under control, long waits can put kids' health at risk by delaying diagnosis and treatment. As a result of the situation, families may also have to pay more. Medicaid could help Karen Hawkins, of Schererville, Indiana, cover specialty care for her wheelchair-bound daughters, ages 8 and 15, who both have complex disabilities. However, in order to qualify, they must see a specialist in their home state -- and the closest one is three hours away. Instead, Hawkins crosses the Illinois border to see doctors an hour away in Chicago because traveling with her daughters is very difficult. "Whatever insurance doesn't cover, we pay out-of-pocket," says Hawkins.
Sometimes, the consequences of the shortage can be tragic. In 2006, Phyllis and Andrew Rabinowitz took their newborn daughter, Rebecca, to an emergency room in their New Jersey suburb because she was severely congested, wheezing, and lethargic. Although the staff physician -- who wasn't a pediatric emergency-medicine specialist -- insisted Rebecca just had a cold and sent her home, she died a day later from a serious viral infection. "Rebecca might be here today if she had been able to see the right specialist," says Phyllis. Hoping to save other babies' lives, the couple started the R Baby Foundation, the only nonprofit focused on improving pediatric emergency care by funding training programs for doctors.
Getting more pediatric specialists into communities won't be easy. Experts have identified the key forces that are driving the crisis, and they're working hard to find solutions.
Demand Is Growing
Brian Maranan Pineda
Although there are actually more pediatric specialists practicing today than there were ten years ago, there are even more children who need to see them. One reason: the increasing number of kids diagnosed with chronic conditions like ADHD, asthma, depression, autism, obesity, and type 2 diabetes. But kids with complex health issues aren't the whole story. Thanks to medical advances that make it easier to detect a wide variety of problems and do something about them, more children are being diagnosed and treated. In addition, more children with serious special health needs survive infancy than ever before. "General pediatricians may believe they don't have the expertise to treat a child with a complicated condition, so they make a referral," says Parents advisor Harry L. Gewanter, M.D., a pediatric rheumatologist in Richmond, Virginia. However, the demand for specialists is also a cultural issue. "Americans want the best, and parents often feel they must see a specialist."
There is a particular need for doctors with mental-health expertise, which the AAP survey says are in shortest supply. "Child psychiatrists are almost impossible to find in many parts of the country," says Polly Arango, cofounder of Family Voices, an advocacy group for children with chronic health conditions and disabilities. When Norma Rosenfield, of Los Angeles, suspected that her 3-year-old son, Daniel, had autism and finally convinced her pediatrician something was wrong, there was an 18-month waiting list to see a developmental pediatrician who could diagnose the condition. After nine months, he was able to get an official diagnosis from a psychologist instead.
It Takes Real Commitment
Despite the huge unmet need, not enough new doctors are choosing to go into specialties. Unfortunately, financial concerns can be a factor: Pediatric surgical specialists often earn significantly less money than general surgeons, and becoming any type of subspecialist requires at least two extra years of low-paying fellowship training -- at a time in their lives when most young physicians are already shouldering a six-figure debt from student loans. "It takes so long for subspecialists to pay off all their debt that their own children are often ready for college before they're making real money from their practice," says Cody Futch, senior director of recruiting for Merritt, Hawkins and Associates, a national physician-placement firm based in Irving, Texas. "Subspecialists typically see kids with tougher cases that take more time, so they also can't see as many patients as a general pediatrician."
In addition, many doctors who want to be pediatricians prefer to practice primary-care medicine -- handling checkups and run-of-the-mill problems like coughs and colds -- with kids who are generally healthy. After all, challenging cases and a lack of backup can be stressful for specialists, who are more likely than regular pediatricians to burn out, according to an AAP report. "I have only one partner, and when he is on vacation or at a meeting, I'm on call for four or five nights straight," says Dr. Benjamin, a pediatric surgeon. "It's physically and emotionally draining." However, doctors who become subspecialists are very passionate about their work, says Dr. Gewanter. "Clearly, we do it for something other than the money."
Specialists Flock to Cities
Doctors in most subspecialties need to practice in a metropolitan area with big teaching hospitals, medical schools, and children's hospitals where they can do research. Cities also provide a critical mass of patients that a specialized practice needs to succeed. However, most families live outside of major cities. "You can make a living as a general pediatrician in a town of 3,000 because every family may come to see you," says Futch. "But if you're a pediatric nephrologist, only a small segment of the population needs your services, so a small city or rural area just won't provide enough patients to support you."
The Government Limits Training
In the 1980s and 1990s, experts thought HMOs would make health care more efficient by funneling patients through primary-care physicians. These gatekeepers were expected to focus on prevention and solve common problems so that there would be less need for subspecialists. As a result, the government limited the number of federally funded slots for specialty fellowships at medical schools and teaching hospitals to cut costs. "But managed care didn't take hold the way people expected," says Futch. Yet the caps -- set into law by the Balanced Budget Act of 1997 -- are still in place. That means doctors interested in specializing may not get one of the coveted slots or might be discouraged from applying for one. The Health Resources and Services Administration has recommended lifting limits on training and paying for more fellowships with government and private funds, but parents need to help raise awareness about how this issue affects millions of individual kids (see "Advocate for Change" on page 169). Insists Dr. Pletcher, "As the country focuses on strengthening the entire health-care system, we need more people to say, 'Don't forget the children.'?"
How Do You Get the Best Care?
When doctors are in short supply, ensure your kids receive proper treatment.
Start with your pediatrician. "Even if you think your child needs a specialist, your regular doctor can often make an accurate diagnosis and begin first-line treatment," says Jeffrey Loughead, M.D., med-ical director of pediatrics for Children's Memorial at Central DuPage Hospital, in Winfield, Illinois. "If your pediatrician's treatment doesn't help after two visits or he doesn't understand the problem, then you can ask for a referral."
Move up on the list. Even a crowded practice will usually reserve a certain number of slots in its schedule for urgent cases, but don't expect to book one by calling yourself. Instead, ask your pediatrician to call for an appointment. "He will have more credibility with the other doctor," says Dr. Loughead. "Have him explain to the specialist why your child needs to be seen as soon as possible."
Request a report. When you see a specialist, ask her to send your pediatrician a note with her findings, treatment, and any further recommendations. Your pediatrician may be able to handle follow-up care.
Make the most of visits. "Seeing a specialist can be overwhelming, especially if your child has a complicated condition," says Polly Arango, of Family Voices. Bring your spouse or a friend along to help you remember details and ask questions. Take a checklist of points you want to cover so you don't slap your forehead on the way home over something you forgot.
Ask about telemedicine. You may not need to visit a specialist miles away if your pediatrician can consult with him on the phone, send images via e-mail, or do an online videoconference. In one re-cent study, emergency rooms in rural Vermont that electronically consulted experts at Seattle Children's Hospital improved their quality of care in 89 percent of cases.
Originally published in the April 2010 issue of Parents magazine.
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