Multidisciplinary approach successful for kids with aerodigestive disorders

The Aerodigestive Clinic, part of the Mayo Clinic Children's Center in Rochester, Minnesota serves the medical needs of children who have complex upper airway, pulmonary, upper gastrointestinal (GI) tract, sleep and feeding disorders. Care is coordinated across a range of pediatric specialties and subspecialties, including pulmonology, otorhinolaryngology, gastroenterology, neurology and sleep medicine. A dedicated pediatrician serves as medical home and interacts with a child's primary care provider; nurse practitioners work closely with physicians and families to ensure coordinated care.

"When we evaluate patients for the first time, we often find they have seen a gastroenterologist, a pulmonologist, a sleep specialist for apnea and an ENT physician, and so there have been many physician visits where parents received conflicting information about conditions that are actually part of the same disease process, explains Rayna M. Grothe, M.D., of the Children's Center in Rochester.

A classic example, she says, is a child treated for a tracheoesophageal fistula who later develops complications such as tracheomalacia, chronic reflux or esophageal stricture. "Most children who undergo tracheoesophageal fistula repair do very well. But sometimes because of the nature of the malformation there are sequelae, and these children typically present with stridor, reflux and difficulty eating. So where do you start? In the trachea or the GI tract? If you only see a gastroenterologist, the reason for recurrent lung infections, fistula or aspiration may be missed," she points out.

In the Aerodigestive Clinic, children with complications of tracheoesophageal fistula repair might see an otolaryngologist, pulmonologist and gastroenterologist as well as speech, feeding, occupational and physical therapists and, if they have problems with apnea, a sleep specialist.

To minimize exposure to general anesthesia, a triple endoscopy is usually performed first:

  • Bronchoscopy to evaluate the upper airway for increased secretions and infections
  • Laryngoscopy to assess for scarring, strictures or breakdown of the fistula repair
  • Upper endoscopy to rule out esophagitis or eosinophilic esophagitis and to take esophageal biopsies

"After the procedures, the specialists talk to the family so they can hear from all three at the same time. This is an example of Mayo's commitment to multidisciplinary care," Dr. Grothe notes.

The team members then have a second multidisciplinary meeting to review results of the triple endoscopy and develop recommendations and a care plan, which might include medical or surgical management of reflux, management of eosinophilic esophagitis, and tracheal dilation or tonsillectomy for sleep apnea. Children who have a feeding problem are referred to the Feeding Clinic, where they have access to the subspecialty care they need.

"Some of these cases are very complex," Dr. Grothe says. "Some kids have multiple congenital conditions such as CHARGE syndrome or syndromes that involve malformation of the lungs or chronic neurologic issues. Others have severe cerebral palsy with chronic aspiration. Some premature infants who were intubated develop subglottic stenosis and are at risk of severe gastroesophageal reflux. Children who are developmentally delayed also may have reflux that is a potential source of worsening symptoms."

The Aerodigestive Clinic has treated more than 100 children, mainly toddlers, since its inception in 2012. Initially, it took about four months for patients to see all the specialists involved in their care. Now, evaluations are completed in four or five days.

"Our patient satisfaction rate is 100 percent," Dr. Grothe says. "Families appreciate having all the tests done at one time and an individualized consensus care plan vetted by all the subspecialists rather than conflicting care plans from different physicians. We're able to do these things because we have the resources and are committed to it. Our physicians participate in the specialty clinics outside of patient care time because they feel so strongly that this is the best way."