Asthma in Kids | Sound like asthma, multiple food allergies and eczema to you? If it doesn’t, perhaps it should. Says Dr. Erwin Gelfand, chairman of the department of pediatrics at National Jewish Health in Denver, “The big concern for us is, many people see asthma and eczema as trivial diseases, versus cancer or heart disease. The fact is people die every year of these diseases. And many, many children and their families are suffering with these chronic diseases and illnesses.”
At the Pediatric Day Program at National Jewish Health, children and their families receive more than a balm for the chronic issues of their disease. The program literally gives many kids their first chance of living a real childhood.
The program, which treats about 16 pediatric patients at a time, cares for kids with major, chronic allergic and immune-system diseases: asthma, food allergy, eczema and immunodeficiency. It uses a unique team approach to first undertake a comprehensive, thorough evaluation, followed by team-led therapeutic treatments and extensive education.
The program serves those children and their families whose management of the disease is no longer working: whether that be a lack of effective outcomes; the number of medicines taken; the safety of the medicines prescribed; too much school absenteeism due to the disease; or a basic sense that the family is suffering under the stress of managing the child’s illness.
The children and their families come from across Colorado and the country and frequently stay one to two weeks. They spend their days in the hospital but stay in an outpatient setting such as a hotel, with relatives or at the Ronald McDonald House.
Each child has a primarty team of an attending physician, an allergy fellow-in-training or physician assistant, and a nurse.
Because chronic illness affects the emotional and social well being of everyone in the family, a psychosocial clinician also is part of the team. Gelfand says, “Any disease that’s chronic leaves a scar on the emotional behavior of the entire family.” Other providers who may be consulted include speech therapists, rehabilitation therapists, dieticians, pulmonologists, gastroenterologists and immunologists.
“It’s really an integrated team,” says Gelfand. “Unlike most places, all the specialties involved are right here, so we talk to each other on a regular basis. We make rounds together, have our planning sessions together.”
Dr. Dan Atkins, head of the division of ambulatory medicine in pediatrics at National Jewish Health and a clinician in the Pediatric Day Program, says that the multidisciplinary nature of the program is one reason for its success. “The child might be seeing an allergist and a gastroenterologist at home, but they’re usually not talking to each other,” he says.
What is it, Really?
The first order of business for any patient is a thorough, comprehensive evaluation. Gelfand says that some diseases are so complex they masquerade as another disease. For example, the team will often pose the question, which foods is a child truly allergic to, and which foods can be added to his diet?
“We have kids who have been taken off foods because of their alleged sensitivities,” says Gelfand. “They actually come in wasting away.” The program administers food challenges under careful diagnosis and supervision. They often find up to 80 percent of foods can be reintroduced into a child's diet. This can be the difference between a child who doesn't eat and one who enjoys pizza and cake at a birthday party.
Atkins says other common issues are: not understanding what exacerbates the underlying problem; not taking prescribed medication or poor technique in administering medications; treatments that are so stressful to the child that the family finds it almost impossible to administer them; or families who hear so many opinions they become “paralyzed by the differences of opinion.”
Once the disease has been accurately diagnosed, patients and their families receive one-on-one instruction on how to manage the disease and provide optimal treatments, including answers to all the parents’ questions and concerns. Says Atkins, “It’s hard to teach them as much as they need to know in the time allotted to an office visit.”
In the day program, for example, a nurse can help an eczema patient who fears getting in the tub due to burning of her skin. Through reassurance and careful, trained supervision of the appropriate bathing process - including hydration of the skin with moisturizers and topical steroid ointments - the child’s skin has usually improved within 24 hours to the point where she can bathe without pain. Gone are the days of the child’s screams and the family’s tension at bath time.
Each patient and family learns about treatment, early warning signs, triggers to avoid, medications to take and practical solutions and techniques to use at home.
Throughout each procedure, a nurse stays with each child, one-on- one. “The nursing staff is superb,” says Gelfand. “They’re with the families eight hours a day, and they’re sort of our conduit with the physical and behavioral needs of the family.”
Caring for a child with chronic illness inherently brings significant family stress. Thus, the day program has psychosocial clinicians who work with each family to identify the sources of stress and explore ways of improvement. The goal is to reduce the overall level of family stress and improve the quality of life as much as possible.
For the patient, there are a number of interventions such as art and play therapy that help the child cope with feelings and fears. Art therapists, psychologists and social workers are an integral part of the program.
For the whole family, there are group sessions with parents and kids. Says Gelfand, “There’s an ambiance that is very conducive to a cathartic experience.”
One of the biggest concerns is often financial and how the child’s care affects the family’s resources. Most insurance covers the day program, often at a negotiated rate. However, because of the very time-intensive nature of the program, many things are not reimbursable. Gelfand says the program provides a lot of subsidized care and “we turn nobody away based on their ability to pay.”
Model Day Program
In fact, the Pediatric Day Program was born out of an insurance challenge. About 15 years ago, insurance carriers pushed back on allowing kids to come for what was then extended hospital stays for what they termed “diseases that are so common.” Says Gelfand, “It was clear that we needed to change the way we approach the treatment of these diseases.”
At that time, the staff saw both the frequency and severity of these chronic allergic diseases increasing ignificantly. Gelfand says that National Jewish was “called on more and more by doctors and parents, but insurance became an issue with an overnight unit.”
National Jewish moved to a day program to avoid overnight costs. They created a program where “kids come in the morning and were exposed to the most intensive diagnostic and therapeutic interventions,” says Gelfand. As the program became adept at the day model, length of stays decreased to the current five- to 10-day average. A key component in this was the coordination “with all the team in order to achieve the outcomes that we desired,” says Gelfand. The result had an enormous positive-impact on the cost.
The team also is involved in research, and new methods are applied within the program. Says Gelfand, “We’ve understood severe asthma based on research that was done here. We’ve looked at eczema and the risk and importance of topical infections.” He says that, for example, about 40 percent of children with eczema have ethicillinresistant Staphylococcus aureus (MRSA), which poses a major challenge because the kids have to be isolated. “So a lot of our interventions have actually come from both the bench and clinical research,” he says.
The Ultimate Outcome
Once a stay is over, the team creates a triangle of care between the referring local physician, the family and national Jewish. “It’s a partnership,” says Gelfand.
The children emerge into a brave new world. Atkins relates the example of a nine-year-old patient who, upon arrival, as asked what would happen if a school bully rubbed peanut butter on him. The boy’s response was, “I would die.”
After evaluation, the team found that not to be the case. They talked him through his fears and true issues, and then rubbed peanut butter on his skin in the safety of the hospital environment. With the burden of fear lifted the boy went home with more than a manageable allergy.
“Our expectation,” says Gelfand “is that any child who comes through the door will see such significant improvements in health that he will leave as a different child.”