Children with high-risk, complex conditions — such as those who need ventilators to breathe — often receive disjointed care, scattered among many providers. This leads to emergency room visits and hospitalizations that could have been avoided. And once in the hospital, many children remain longer than they should for lack of good home care.
At home, families face daunting challenges. They must learn to use and maintain their children’s medical equipment and handle emergencies. They often have little or no access to home nursing services. Private insurance rarely covers home nursing for more than a limited number of hours, and Medicaid pays too little to attract qualified nurses. Many parents end up quitting their jobs to provide care.
That’s why Robert Graham, MD, in Boston Children’s Hospital’s Division of Critical Care Medicine, conceived the CAPE program in 2007. The program provides a medical home for children with chronic respiratory failure, offering comprehensive, customized, long-range care. That includes care coordination (with specialists, rehabilitation, outpatient clinics and schools), phone and telemedicine consultations and outpatient visits. Crucially, it also includes house calls, with a 24/7 on-call response for acute issues.
“Some children come to us after an acute injury like a spinal cord injury,” says Graham. “Others require support for chronic or progressive conditions, such as neuromuscular diseases like muscular dystrophy or spinal muscular atrophy, or congenital heart disease.”
The CAPE staff is small: just one critical care physician (Graham), one pediatric nurse practitioner, a social worker, a pediatric respiratory therapist and a program coordinator/administrator. Yet a recently published study shows that the program doesn’t merely improve outcomes or provide a better experience for families. It also saves a substantial amount of money.
Smarter health care for children with medical complexity
Graham and colleagues looked at data from the 346 patients and families who enrolled in CAPE from October 2011 through September 2015. All program encounters were carefully logged with an adapted version of the Care Coordination Measurement Tool, previously developed at Boston Children’s. In total, there were 11,960 encounters, including 1,202 home visits, 673 clinic visits and 4,970 telephone or telemedicine encounters.
From the data, Graham’s team estimates that CAPE’s interventions averted 556 emergency department visits and 107 hospitalizations over the four-year period. Conservatively translating this into dollars, and after accounting for the program’s total staffing cost of $886,849, CAPE saved $1.1 million annually or $407 per patient per month. A second nurse practitioner has since been added to the staff.
Current fee-for-service payment models don’t align with programs such as CAPE. “Comprehensive care for high-risk populations holds the potential to benefit all stakeholders — children, their parents, community-providers, hospitals and payers,” says Graham. “This care model addresses direct medical needs as well as health, educational and social demands. Our study demonstrates that it also improves efficiency and reduces costs by shifting care from inpatient to the outpatient setting and preventing acute hospitalizations.”
Graham notes, however, that current “fee-for-service” payment models don’t align with programs such as CAPE. Such models often do not reimburse 24-hour accessibility and care coordination services. “The financial implications of our study will inform institutions and payers, public and private, as we navigate healthcare reform,” Graham says.
Natalia Wylie, whose 4-year-old daughter Sofia is being treated at Boston Children’s for spinal muscular atrophy, still relies on the program. “I don’t know how I could get though every illness at home without my CAPE team,” she says. “They have saved us many ICU stays, which typically last two weeks per illness and cost an average $125,000. Knowing we have the whole CAPE team at the tip of our fingers and that we can do almost anything at home is very reassuring.”
Findings were published in February in the journal Pediatric Critical Care Medicine.
Learn more about the Critical Care, Anesthesia, Perioperative, Extension (CAPE) and Home Ventilation Program.