A Medical Home for Pediatric Patients With Complex Aerodigestive Issues

For children with complex medical conditions of the upper and lower airway, respiratory system, esophageal disorders, and swallowing and digestive issues, the Cleveland Clinic Pediatric Center for Airway, Voice and Swallowing Disorders (PCAVS) is an on-ramp for specialized and coordinated care.

The PCAVS Clinic is one of Cleveland Clinic’s largest and longest-running multidisciplinary clinics, with about 200 children receiving care each year.

John Carl, MD, pediatric pulmonologist, who leads the program alongside Brandon Hopkins, MD, pediatric otolaryngologist, says the center was created more than a decade ago to address a need to better coordinate and streamline care across specialties for patients with congenital or acquired aerodigestive issues.

“All of us in our individual specialties get to see a particular child, under the same set of circumstances, at the same time, and then we can present a unified plan to the family and to the referring pediatrician,” says Dr. Carl about the care team, which includes providers from pediatric pulmonary medicine, otolaryngology, gastroenterology and psychiatry, as well as social workers, dieticians, speech pathologists, and physical, occupational and speech therapists.

Coordinating care: Before, during and after the visit

Coordination of care begins well before the patient and family arrive at Cleveland Clinic for the appointment, explains Anne Banas, CNP, aerodigestive clinic coordinator of the center, who has been with the program since its inception. She implemented a virtual pre-visit in advance of the in-person appointment to address patients’ and families’ primary concerns. This sets the tone for the in-person visit, creates efficiency for the patient and the care team, and helps manage expectations for everyone involved.

“I review their questions and concerns since the last visit and make sure we’ve addressed everything in the plan. I also conduct an exam in case something else is going on that can be managed in real-time, rather than it then becoming of the focus of the clinic day,” she explains.

On the day of the appointment, Ms. Banas leads a huddle with the patient’s care team and briefs caregivers on the family’s goal for their visit. The patient and their family are roomed for the duration of the visit while care teams rotate through the clinic room. If needed, in-office diagnostic procedures and endoscopic airway assessments are also performed during the visit, and if surgical interventions are warranted, they can be scheduled with multiple providers at the same time rather than separately to reduce exposure to anesthesia.

At the end of the appointment, the team regroups to develop a coordinated treatment plan, which is sent to the family and also integrated into the patient’s electronic health record. “This way, if they are admitted, seen by another provider, or are in the ED, every Cleveland Clinic provider can see their vent and trach settings and our past recommendations,” she says.

A clinical case

Dr. Carl recalls one particular patient who was diagnosed with a severe form of myopathy, a chronic neuromuscular disease characterized by muscle weakness, usually most severe in the face, neck, and proximal muscles, and with no cognitive involvement.

“Patients with this type of condition have specific respiratory needs,” notes Dr. Carl, “often they have pretty good diaphragmatic function, but they still have a need for ventilator support because they don’t have the ability to protect their airway well, particularly during episodic common viral respiratory infections. They may also lack the neuromuscular strength to have an adequate inspiratory effort while swallowing to keep them out of chronic respiratory failure.”

These patients are cognitively normal, explains Dr. Carl, and it’s important to encourage and support their goals—and their family’s—for participation in school and extracurricular activities.

For this patient, special considerations for care include full-time ventilator support, which requires collaboration between pulmonary and otolaryngology specialists, a physiatrist to assist with wheeled mobility adjustments, a social worker to help the family navigate school-based resources, a speech pathologist to assist with speaking with a tracheostomy, and other care collaborators as issues arise.

Instead of having to navigate all of these services independently, the PCAVS center leverages care across the enterprise, making it easier on the patient and their family.

Quarterbacking care across the enterprise

Ms. Banas adds, “Maximizing collaborative support is essential to help the patient achieve optimal function and a good quality of life.” For families dealing with a diagnosis that requires complex care and support, PCAVS can be a single point of care.

“We can kind of be their quarterback and help them navigate services across the institution, and, hopefully, we are giving these families a sense of comfort to know that we know their kid, their needs, and we are here to be a partner.”