CDH Research Update; Standard of Care

Dear CDH International Members and Friends,

We would like to bring to your attention the research publication shared with you below.  

The data is clear; there is no argument for large CDH centers and patient relocation when a Standard of Care can ensure appropriate care for all patients born with Congenital Diaphragmatic Hernia at every equipped children’s hospital.

We invite you to work with CDH International, GRACA, the WHO, NIH, other organizations, pediatric surgeons, and families around the world to continue to push for better survival rates for all babies born with CDH through a Standard of Care.

At the end of this email, will will share with you the ways that you, your company, your hospital and your loved ones can get involved.   This is a unique opportunity to personally help save the lives of 1000’s of children.  Will you be part of stopping Congenital Diaphragmatic Hernia?

Best Regards,

Dawn Ireland, President & Founder
Jason Miller, CDH Patient Registry Administrator

Journal of Surgical Research

Volume 273, May 2022, Pages 71-78
Read the full article at

Center Volume and Cost-Effectiveness in the Treatment of Congenital Diaphragmatic Hernia

Ruth Lewit MD, MPH and Tim Jancelewicz MD, MA, MS

Le Bonheur Children’s Hospital, University of Tennessee Health Science Center, Memphis, Tennessee


The care of patients with congenital diaphragmatic hernia (CDH) is expensive, yet little is known about variability in cost-of-care for these patients. The purpose of this study was to examine the cost-effectiveness of CDH treatment, comparing high- versus low-volume centers.


This is a retrospective study of neonatal patients with CDH at U.S. hospitals using data from the Pediatric Health Information System database (2015-2018). Centers were considered high-volume if they had ≥10 patients with CDH for ≥ 2 y. Cost-effectiveness analysis was performed with cost per survivor as the outcome measure, and probabilistic sensitivity analysis was performed.


A total of 1687 patients were included in the study. Overall mortality was 24.4%. Patients at high-volume centers had a longer mean length of stay (64 d versus 48 d for low-volume centers, P = 0.0001) and higher extracorporeal life support (ECLS) rates (32% versus 24%, P = 0.002). Risk-adjusted mortality did not differ between high- and low-volume centers (23.9% versus 25.9%, P = 0.39), except when ECLS was involved (42% versus 56%, P = 0.011). Costs were significantly higher at high-volume centers ($395,291 ± 508,351 versus $255,074 ± 308,802, P < 0.0001). Survival status, ECLS use, operative repair, length of stay, high-volume status, and gestational age were identified as independent drivers of cost. On cost-effectiveness analysis, low-volume hospitals were more cost-effective in 95% of simulations.


High-volume centers have substantially higher costs without an associated survival benefit and are less cost-effective than low-volume centers. Standardization of care is necessary to minimize the delivery of low-value care.


Congenital diaphragmatic hernia (CDH) is a common neonatal surgical condition seen in approximately 1 in 3000 live births. Overall mortality is approximately 30%, and CDH is universally fatal without surgical correction. Those who survive often have long hospital stays, and some require extracorporeal life support (ECLS). Very few studies have investigated the costs associated with the care of patients with CDH. A recent study by Cameron et al. showed that CDH had the highest cost burden among surgical procedures in pediatrics, with an adjusted median hospital cost per patient of $158,113.1 An earlier study from 1994 reported the mean cost per patient, including hospital costs plus professional fees, was reported as $137,000 in 1993 dollars,2 which would be equivalent to $245,251 now adjusted for inflation.

Studies further elucidating the trends behind these high costs are limited. Poley et al. found that treating CDH was cost-effective compared with no treatment.3 Studies have demonstrated that ECLS is the largest contributor to these high costs4 and that higher costs are seen in patients with more severe disease.5 Furthermore, there is conflicting evidence regarding the relationship between center volume and outcomes in CDH.6

With increasing health care costs nationally, cost-effective care and avoidance of low-value care remain vitally important components of health care delivery. Risk-adjusted mortality and cost-effectiveness comparing high- and low-volume centers would provide valuable data that could inform the construction of clinical practice guidelines for CDH. The purpose of this study was to expand on prior work to better define the relationship between center volume, outcomes, and cost in CDH care and to perform a full cost-effectiveness analysis comparing high- and low-volume centers to determine if greater expenditure is associated with any survival advantage in the care of CDH. A secondary objective of this study was to explore the significant drivers influencing expenses. It is hypothesized that high-volume centers will have equivalent risk-adjusted mortality to low-volume centers and will be less cost-effective.

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