CDH Program at Phoenix Children's Reveals the Positive Power of Teamwork
Although rare, approximately 2.5 neonates per 1,000 live births, the effects of congenital diaphragmatic hernia (CDH) can be devastating. Despite medical advances in neonatal critical care medicine to manage the effects of the disease, individual presentations include a wide range of severities and associated cardiopulmonary disease, causing morbidity and mortality rates to remain high. The majority of diagnoses occur in utero, yet each will require an individualized plan of care to give each patient an optimal chance at survival.
The Congenital Diaphragmatic Hernia Program at Phoenix Children's offers a distinct approach to the management of CDH. Their method is dedicated to restructuring care to improve quality, enhance standards, and ensure that every patient has access to the latest therapies and interventions available.
Five years ago, the program made two monumental decisions that would positively enhance care coordination and optimize delivery. Stakeholder input aided in creation of an early stabilization pathway with the purpose of standardizing early practices immediately following delivery of a neonate with diagnosed CDH. This was launched in 2019 and involves resuscitation goals, respiratory care guidelines, and criteria for escalation to extracorporeal membrane oxygenation (ECMO) support.
The second change was introduced later in 2019 and involved the roll out of a multidisciplinary team-based rounding protocol, an uncommon, yet truly valuable arrangement for a CDH program. Daily rounds are held at the bedside and include representation from all associated disciplines such as neonatology, cardiology, pulmonology, pediatric surgery, pharmacy, nursing, and family/caregivers. Communication parameters were structured with stakeholder input, and every medical decision is made as a team.
Consistency and collaboration cultivate trust, as the same clinical providers present in the NICU care for these patients as they advance into the outpatient multidisciplinary clinic and into young adulthood. Both physical and neurodevelopmental health is prioritized, allowing these complex patients the ability to thrive with unwavering support.
Recently, an internal retrospective review was conducted to evaluate the effectiveness of the CDH program spanning from January 2012 to December 2022. Outcomes were compared between pre-and-post-pathway/rounding protocol implementation, and an increase in survival was observed among the 70 identified cases in regard to both program additions (stabilization pathway: 66.7% vs 89.3%, p=0.038; team rounding protocol: 69% vs 87%, p=0.04). Researchers noted that additional interventions began during this timeframe that may have also contributed to this positive change. An abstract on the stabilization pathway was accepted for presentation at the American Academy of Pediatrics National Conference & Exhibition in Washington, D.C. in October 2023.
The data is overwhelmingly clear. The Congenital Diaphragmatic Hernia Program at Phoenix Children's is advanced and ahead of national averages concerning survival and patient outcomes. According to Mark S. Molitor, MD, pediatric critical care surgeon and ECMO specialist, "The team approach to complex care is something that takes a while to catch on because it's time-consuming. You have to turn that passion into a commitment to take the time required. You have to get everyone to buy in. It's definitely changed our practice."
To make a referral, contact Dr. Mark Molitor at mmolitor@phoenixchildrens.com.
