Exclusively treating sleep disorders in children, The Sleep Center at Children’s Hospital of Philadelphia (CHOP) uses a multifaceted team approach to ensure CPAP compliance and positive treatment outcomes.
By Lori Sichtermann
The Sleep Center at The Children’s Hospital of Philadelphia (CHOP) is a unique facility for a number of reasons. The facility, which operates within the hospital’s division of pulmonary medicine, is the only multidisciplinary sleep disorders center in Pennsylvania, New Jersey, and Delaware dedicated exclusively to children.
With this type of specialization, CHOP’s Sleep Center has become known throughout the region as a facility that can diagnose and care for children with virtually any type of sleep disorder. According to Carole Marcus, MD, director of The Sleep Center and professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania, CHOP’s Sleep Center most commonly diagnoses sleep-disordered breathing, narcolepsy, behavioral problems associated with bedtime schedules and nighttime wakings, as well as issues pertaining to circadian rhythm disorders.
While the issues addressed at the CHOP Sleep Center are similar to those addressed at adult-centric sleep labs, the patient base differs quite dramatically. “When children come to us, they often are suffering from other complex medical conditions in addition to their sleep disorder,” Marcus added. “Therefore, our staff of physicians and technicians has to be incredibly diverse in their backgrounds. There’s a multidisciplinary nature to our group.”
As Marcus explained, on any given day, The Sleep Center at CHOP consists of psychologists, pulmonologists, neurologists, sleep techs, and respiratory therapists. The specialists work together to evaluate and manage children with obstructive sleep apnea, as well as chronic lung diseases, degenerative muscle disease with chronic respiratory failure, hypoventilation syndromes, and respiratory control disorders.
According to Melissa S. Xanthopoulos, PhD, pediatric psychologist and CPAP adherence coordinator for The Sleep Center at CHOP, it’s this cohesiveness among specialists and departments that has helped the center to grow and evolve over the last several years. “The very structure of the Sleep Center is quite unique, with so many different disciplines working closely together. We’re all considerate of each other’s background, and we learn from each other,” she added. “For example, when a child is diagnosed with a sleep disorder requiring noninvasive ventilatory support in the form of CPAP or BiPAP, the staff works together to help the family understand the causes and consequences of the disorder, how to use and care for the equipment, and how to best implement the treatment into the child’s routine and family’s lifestyle.”
This team approach has enabled The Sleep Center at CHOP to become one of the leading sleep medicine research facilities in the country. Over the last decade, the center has grown exponentially as a result of its unique structure and areas of expertise.
“When I came to CHOP 10 years ago, we had only one, four-bed lab and we did four studies a night. Now we’ve grown to have three labs with a total of 14 beds, and we do nearly 20 studies every night.” Marcus noted.
Today’s Sleep Center at CHOP provides care at three locations spread across the greater Philadelphia metro area. The primary sleep laboratory is housed within CHOP’s main campus building, a 535-bed pediatric hospital in Philadelphia’s University City neighborhood.
In the spring of 2010, CHOP opened a Specialty Care Center in King of Prussia, Pa, that offers a variety of pediatric outpatient specialty medical and surgical services, as well as ancillary testing to families in nearby Montgomery County and the Main Line area.
Continuing its growth, the hospital partnered with Virtua Specialty Care Center in Voorhees, NJ, in the spring of 2013. The partnership was developed to offer pediatric sleep services on the Virtua campus.
Both the King of Prussia and Virtua facilities contain a sleep laboratory, which brings the total bed count to 14 across the three facilities. In terms of quantity of care, those numbers have increased over the last decade as well. The main campus Sleep Center employs four technicians for every six patients, or one technician for every 1.5 patients, while at the satellite labs, there is one technician for every two patients. The lab flexes staff to labs that have higher acuity for a given night.
“We’ve grown dramatically over the past decade, and so has the field of sleep medicine,” Marcus said. “However, I’m proud that even with the growth we’ve experienced within The Sleep Center, we continue to offer quality over quantity. Our main objective has always been quality care.”
Settling the Youngest Sleepers
Board-certified in pediatric pulmonology and sleep medicine, Marcus was drawn to pediatric sleep science due to a strong sense of curiosity and compassion. “I started sleep medicine because I was doing pediatric pulmonary training and I became fascinated by the children with sleep apnea—the fact that they could be so healthy and fine and normal when they were awake and in such distress when they were asleep,” she recalled. “At the time, no one knew anything about sleep medicine and what these children were really going through. I wanted to learn more and see what I could do to help these young people.”
Marcus came to CHOP because of the facility’s unique, collaborative structure, which she thought was an ideal setting for such an evolving industry. In the early days of her career at the facility, she worked with children ranging in age from birth to 18 years and she became acutely aware of the nuances of working with the younger set. “Kids are very different from adults. They have different respiratory rates, they have different behavioral patterns, and they have different growth considerations compared to adults,” Marcus said. “You can’t assume that the same types of treatments that work for adults will also work for children.”
To this point, Marcus noted the severe lack of innovation in the sleep industry regarding equipment and products that are specifically geared to children. And Xanthopoulos, who coordinates CPAP usage at the center, agreed.
“One of the most difficult aspects of working with infants and babies is the equipment,” Xanthopoulos said. “There are not a lot of options out there for pediatric equipment and interfaces, and finding equipment to fit these small-sized patients is the biggest struggle. For instance, an interface may fit, but then the headgear doesn’t—a lot of these types of equipment are not interchangeable.”
When it comes to those in the adolescent population, the issues change again for Marcus and her team. As she noted, when you work with a child or adolescent, you’re also working with the child’s family or care providers. “We do a significant amount of training for both the patient and the parent,” she said. “It’s crucial that the parents or caregivers understand exactly what is going on because they are the ones, in most cases, who implement the treatment in the home.”
The practice of being so inclusive with parents and caregivers didn’t happen overnight. Much like the field of sleep medicine itself, the protocols and procedures at the center have evolved through time and experience. “We’re constantly asking ourselves how we can help each family and improve their care,” Xanthopoulos explained. “Part of it is care coordination and helping families implement an intervention for treatment. We’re only as good as the implementation of the treatment we’re talking about.”
Currently, The Sleep Center at CHOP has more than 350 patients who receive CPAP therapy. More than 40 physicians and technicians work in three separate locations literally around the clock, seven days a week, running sleep tests and reading results.
The number of patients, physicians, and tests at CHOP mirrors an interesting phenomenon within the field of pediatric sleep medicine: it’s growing. As Marcus noted, she and her colleagues have noticed more awareness in the medical community, as well as in the public, regarding sleep disorders and the importance of treatment. “I don’t think the growth in the industry is the result of kids having more sleep problems than before. I think that it’s become more recognized today than it ever was,” she said. “However, because we are seeing more children, we’re noticing an increase in obesity numbers and behavior issues with school-aged children.”
Xanthopoulos agrees and pointed to some key social issues that she feels are impacting the growing number of adolescent patients with sleep disorders. “Kids are going to school earlier and earlier. Developmentally and biologically, they are not set up to wake that early in the morning. They’re working against biology by waking up earlier than their bodies want to. And, in most cases, they’re going to bed later as well.”
What’s more, Xanthopoulos noted the amount of technology kids have access to plays a significant role in sleep behavior. “There are TVs, computers, cell phones, and tablets in bedrooms now. These are all making for bad sleep environments, which are contributing to sleep disorders.”
For all of these issues, Xanthopoulos explained there are behavioral treatments that are proven to be effective. However, there is a slight catch: adherence. “CPAP completely treats sleep apnea if you wear it, but if you don’t wear it, it doesn’t work at all,” she said.
According to Xanthopoulos, the issue of CPAP adherence was a significant issue for CHOP’s Sleep Center for quite some time. Patients were prescribed equipment, given a tutorial on how and when to use it, and then sent on their way. “Kids were being prescribed the treatment, but not all of them were coming back for follow-up appointments,” she said. “We had no way to calculate how many people were following through with the CPAP therapy, or what kind of progress they were making on their treatment.”
To remedy this issue, Xanthopoulos worked closely with Marcus to improve data collection within The Sleep Center. They resolved to create the position of CPAP coordinator to assist and implement CPAP treatment, as well as create a protocol for patient follow-up and adherence.
With a strong background in health psychology and training in lifestyle management and health behaviors, Xanthopoulos shares the position and its responsibilities with a respiratory therapist in the center. “It’s a unique and innovative model of care that we provide,” she said. “The planning that we do to ensure we give patients the optimal care is something we’ve become very proud of.”
As she explained, when a patient is diagnosed with obstructive sleep apnea, the nurses and physicians talk extensively with the patient and their family about the diagnosis and the ramifications if untreated. Collectively, the medical team and family decide the best treatment option for the patient, considering the needs of patient and family.
Once the patient is fitted with the mask, Xanthopoulos works closely with the child on what she calls systematic desensitization, or the act of getting used to something over time. “We have a protocol that we tailor to each family. For younger kids, parents hold the mask to the child’s face and provide a lot of positive reinforcement and cheering and then work to put the headgear on,” she said. “From there, they work toward turning the pressure on and then introducing it into the bedtime routine. We try to get them to focus on positive reinforcement and not on any negative behaviors.”
For adolescents, Xanthopoulos encourages parents to pair wearing the mask to something the child really enjoys, such as watching a favorite TV show or playing a video game so the teen is distracted while getting used to the sensations and associates CPAP with positive experiences. “One of the important things for children and adolescents is to get used to the sensation of wearing the mask with the pressure so they can eventually learn to sleep with it on,” she said.
The most crucial element of Xanthopoulos’ position working with patients and their families is making sure that the involved parties feel supported throughout the process and that all their needs are met. “It’s a multipronged approach to support the patient as much as we can in order to improve their usage of the equipment,” she explained. “That’s the biggest problem with CPAP—patients will not start wearing it or will stop using it if it gets to be too much of a hassle or is too uncomfortable.”
To combat this willingness to abandon treatment, The Sleep Center performs phone calls to check in and see how the patient is doing with the equipment. These calls are made weekly for the first month following the prescription of CPAP equipment and continue more sporadically as the family progresses. “The RT fields any technical issues with the equipment, the nurses and physicians address medical concerns such as side effects, and I address any adherence issues. Everyone also works to make sure follow-up appointments are scheduled so we are able to see patients in person in the clinic and are getting titration polysomnograms. That’s how we work together as a team. We try to nip any problems before the patient decides they can’t do it anymore.”
Leading the Way
The Sleep Center at CHOP is a multifaceted operation. It consists of numerous professionals with different specialty backgrounds working in various locations on any number of sleep-related issues. “From a staffing perspective, it takes a lot of coordination to ensure we have the right staff mix for the right patient mix for any particular study in the sleep lab,” said Brian J. Schultz, RPSGT, clinical supervisor of the Main Sleep Lab. “What sets us apart is our ability to get the balance right pretty much every time.”
This balance is an important element for the day-to-day operations in the sleep lab. “Whether it’s a research protocol or an idea to study a patient in a different manner, our doctors are on top of what’s going on in the field and set high standards on how we can do more complicated studies or perform studies in a different manner,” Schultz explained. “This has really set the tone for our entire program.”
Schultz noted a particular example in which a fellow in The Sleep Center initiated a research study that looked at NICU babies with cleft palate. Once the study was initiated, the volume of NICU babies increased in The Sleep Center, which also resulted in physicians in the NICU realizing that more patients in their department could benefit from an overnight sleep study.
Marcus has a distinct affection for the research. “Working with children, it’s wonderful to help these individuals feel better. But when we do research, we have the potential to help hundreds of thousands of people,” she said. “Sleep medicine is a rewarding field. And it’s great to be in an industry that’s growing. Here at CHOP, we really feel like we’re making a positive contribution and are at the forefront of it.” RT