We really want to support these families in making complex decisions about their children’s care. … It’s really bringing the whole team together, understanding what the patient values are, what they expect from their care, and using our best available clinical base of evidence for better outcomes. —Dana Thompson, MD
Explore This IssueMarch 2019
Coordination of Care
Shelagh Cofer, MD, co-director of the aerodigestive program at Mayo Clinic Children’s Center in Rochester, Minn., said the multidisciplinary team there started after it became clear that “our primary care providers often do not have the time nor the comfort level with these very complex children”—a child, say, with chronic lung disease, tracheobronchomalacia, a tracheostomy, and feeding problems—and subspecialists often have “tunnel vision” in their approach. “The result was poor coordination of care,” she said.
Getting the integrated team in place was time-consuming and labor-intensive, and involved focus groups with families and a two-day retreat for planning. The team created a list of core services, major conditions, and minor conditions. Patients have to meet a certain number of criteria in each category to come under the care of the aerodigestive team. Among the team’s principles are assigning a clinician “quarterback” for a patient’s activities and reserving appointment slots, with centralized scheduling that incorporates all the disciplines involved.
A comparison of 16 patients cared for before the team was created and 23 under the team’s care showed impressive results (Int J Pediatr Otorhinolaryngol. 2018;113:119–123). “It was really quite dramatic and stunning to know that the time for diagnosis went from approximately 150 to six days,” Dr. Cofer said. There has also been a 50% reduction in anesthetic exposure and tests involving radiation, and 40% lower costs, mostly due to expenses associated with testing and radiology, she added.
At Cincinnati Children’s Hospital, the pediatric voice disorders program stemmed from the “idea of really understanding and treating the voice problems associated with pediatric airway reconstruction, which in our program were becoming more of an issue,” said Alessandro de Alarcon, MD, MPH, the director of the center overseeing the program.
The changes involved additional training; Dr. de Alarcon earned a master’s in public health and an observership in laryngology so he could help the program make better use of epidemiology, as well as add new technology and start new research collaborations. The visualization offered by high-speed video endoscopy and dynamic voice CT, for example, have helped to evaluate the voices of patients who’ve undergone a reconstruction. A new procedure he developed, the posterior cricoid reduction, involving removal of a section of the rear portion of the voice box to improve voice quality without sacrificing breathing, has changed the center’s practice, he said.
Therapy is a crucial component as well, he said. “In building this team, you learn that when patients get surgery, you change their instrument,” Dr. de Alarcon said. “And to make them more efficient in using their new instrument, they have to re-learn how to use it. That’s where [a] speech pathologist in collaboration can help really improve their voice outcomes. It’s putting together all those pieces over almost a decade and a half.”
The effects can be huge for patients, he said. For example, a 10-year-old girl using the glottis rather than the supraglottis to create voice makes a striking difference. “That means going from sounding like a man to sounding like a normal 10-year-old girl, so [there are] a lot of social implications for that,” he said.
Blake Papsin, MD, MSc, professor of otolaryngology at the Hospital for Sick Children in Toronto, discussed the multidisciplinary cochlear implantation program he helped build—a program that went from 30 devices
implanted in 1999 to more than 100 per year within 10 years, and that continues to grow today. The main team components are diagnostics, candidacy decisions, aftercare involving device programming, verbal therapy, administrative tasks, and education. The result has been a reduction in case time and in disposable costs, which has led to the huge increase in implantations, Dr. Papsin said.
He also said that creating a new program that excels is largely a matter of putting the right people in the right roles. “It’s not specifically, ‘I need an audiologist,’” he said. “You need a great person who happens to be an audiologist.” A keen focus is also critical, he said. “You want something that we’re all passionate about. You want to be the best in the world at it.”
He described the program’s trajectory this way: “You build a single concept, you bring people to that idea, you reach out to the stakeholders, you see what the community wants, you deliver, you’re a purveyor of quality care, you reach out [to collaborators], you starting getting research, you explode.”