Mayo Clinic Children's Center plays a lead role in defining complex airway reconstruction in children. In addition to providing multidisciplinary coordinated care, including endoscopic reconstructive procedures, Mayo Clinic is at the forefront of an international effort to standardize outcome measures for pediatric laryngeal and tracheal reconstructions.
"We are building a body of evidence to guide decision-making about these patients with complex breathing problems," says Karthik Balakrishnan, M.D., M.P.H., a pediatric otorhinolaryngologist at Mayo Clinic Children's Center in Rochester, Minnesota, and leader of the international collaborative group. "The goal is for any surgeons performing these procedures to know what experts around the world think are important considerations."
The collaborative group comprises more than 30 physicians — including otorhinolaryngologists, general pediatric surgeons, cardiothoracic surgeons and pulmonologists — from 10 countries. Dr. Balakrishnan led a similar project on standards for treating lymphatic malformations in the head and neck, as described in the 2015 issue of Otolaryngology-Head and Neck Surgery, and is planning future efforts on airway reconstructive procedures for swallowing and voice problems.
"We're working on creating an international database," Dr. Balakrishnan says. "So a surgeon who hasn't done many airway reconstructions and wonders, for example, how long to keep a child sedated afterward could pull up that information on a website or app."
The outcome measures for airway reconstructions involve dozens of variables to be weighed in presurgical planning as well as during and after surgery. Presurgical considerations include not only the severity and cause of the patient's problems but also overall health.
"We want to think about the comorbidities that could affect the procedure's outcome and the child's recovery. Sleep apnea, pulmonary disease, gastrointestinal status, Down syndrome — there is a vast range," Dr. Balakrishnan says.
Post-surgical variables include general factors that would apply to any surgery — such as quality of life, and patient and caregiver satisfaction — as well as factors specific to the procedure, such as complications and adverse events, and breathing and swallowing outcomes. The standardized measures can also serve as reporting measures in research studies.
"When everyone is reporting different types of outcomes, it's impossible to pool data from multiple studies," Dr. Balakrishnan says. "We can do better than learn by trial and error."
Mayo Clinic Children's Center's treatment expertise
As a large-volume center, Mayo Clinic diagnoses and treats many children with airway problems due to premature birth, congenital anomaly or acquired conditions. "We see excellent outcomes," Dr. Balakrishnan says. "We have treated children who had tracheotomies for years, who failed multiple previous reconstructive surgeries and who now are rid of the tracheostomy tube and getting on with life."
Mayo Clinic is one of the few centers in the United States that routinely performs complex endoscopic reconstructions of the pediatric larynx and trachea. Endoscopic surgery generally involves less risk and morbidity, and faster recovery.
"One common presentation is kids who have both vocal cords paralyzed and the airway obstructed," Dr. Balakrishnan says. "In the past many of those children would have needed a major open surgery or tracheotomy. With an endoscopic laryngeal reconstruction, we can preserve some of the voice and some swallowing function but still open the airway and avoid a tracheostomy."
When planning a complex pediatric airway reconstruction, Mayo Clinic Children's Center surgeons use 3-D-printed models of the patient's anatomy. "The models help us plan the surgery and sometimes even practice the procedure," Dr. Balakrishnan says. "These models often change the surgical plan in ways we didn't anticipate from looking at the standard CT scan. We have seen the beneficial changes in surgical outcomes."
In addition, Dr. Balakrishnan and R. (Richard) Paul Boesch, D.O., a pediatric pulmonologist at Mayo Clinic Children's Center, are leading a national effort to define and standardize aerodigestive care for children.
Patients also benefit from the multidisciplinary, coordinated approach to care provided by Mayo's Aerodigestive Clinic. The integrated practice model followed throughout Mayo Clinic Children's Center facilitates communication among a team of specialists. Depending on the patient, the aerodigestive treatment team might include pediatric subspecialists in otorhinolaryngology, pulmonology, gastroenterology, neurology, sleep medicine, speech pathology and occupational therapy. These pediatric subspecialists, including Dr. Balakrishnan and Dr. Boesch, are leading national efforts to define and standardize aerodigestive care for children.
Special efforts are made to involve and educate caregivers. Before the child's initial visit to Mayo, a nurse coordinator conducts an intake interview with the parents by telephone. A key component is discerning the parents' concerns and goals for the visit so that they can be addressed.
Caregiver education is an important part of the actual visit. "We know that parental involvement and investment in their child's care dramatically changes outcomes, especially for kids with complex conditions who require home care," Dr. Balakrishnan says. "At the end of every visit to Mayo, a member of the care team meets with the parents to be sure they're clear about the next steps.
"We provide complete follow-up care, which can last from a few weeks to several years," he adds. "We are committed to caring for these children until the condition that led them to come to us is treated adequately."
For more information
Balakrishnan K, et al. Standardized outcome and reporting measures in pediatric head and neck lymphatic malformations. Otolaryngology-Head and Neck Surgery. 2015;152:948.