Family-centered Approach Raises CPAP Adherence

Short- and long-term consequences of obstructive sleep apnea syndrome (OSAS) are well known and require prompt intervention.

Adenotonsillectomy is often the initial treatment because adenotonsillar hypertrophy is the most common cause of OSAS in otherwise healthy children. However, residual significant OSAS may persist in as many as 30 percent of children after adenotonsillectomy. Patients at high risk for obstructive sleep apnea — such as those with trisomy 21, cleft palate/craniofacial anomalies, Prader Willi syndrome, obesity, and others — may have an incomplete response to surgery or may not be surgical candidates, thereby requiring treatment with continuous positive airway pressure (CPAP).

With early effective intervention, such as CPAP, it is possible the sequelae of OSAS can be avoided and patients may reach their functional capacity.

The high volume of patients at the Sleep Center at The Children’s Hospital of Philadelphia (1,000-plus per year; 300 on CPAP for OSAS) and its Sleep Laboratory (3,000-plus a year) included a growing number of children with OSAS who were not surgical candidates, and therefore CPAP was prescribed.

About the CPAP Program

In response, the Center developed a CPAP Program defining a uniform approach to initiation and desensitization, patient education, behavioral and technical support, and follow-up frequency. We assembled an interdisciplinary team, including a behavioral psychologist and a respiratory therapist, to provide comprehensive care and coordination for patients.

Prescribing CPAP for OSAS is easy, but successful treatment requires a comprehensive family-centered approach with systematic support. Our CPAP coordinators introduce the patient to the equipment and implement an individual behavioral plan; manage the database; and make follow-up phone calls to all newly diagnosed patients to provide support during the desensitization process and to coordinate clinical follow-up and overnight polysomnogram (PSG) appointments.

Coordinators reward the patient with a trophy when adherence reaches 85 percent usage and offer to photograph the child for our wall of CPAP Champs. By the end of the first year, coordinators made more than 1,600 phone calls to 144 new CPAP patients, follow-up clinic appointments increased to 80 percent, and more than 80 percent of patients underwent CPAP titration studies. Average time to titration was three months.

One of the most effective strategies we implemented to improve CPAP adherence was to partner with our local durable medical equipment companies to institute a consignment program. That way, we provided home equipment and education in the CHOP Sleep Center at the initial visit, and patients left with their own home equipment. More than half the patients get their equipment at their initial visit. Adherence to CPAP therapy, based on download of the SD card, increased from an average of 175 minutes to 325 minutes per night.