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Pediatric Heart Failure: It's Finally Growing Up

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Heather T. Henderson, MD
Duke University Medical Center
Durham, NC, USA

There is a well-known saying in pediatrics ... children are not small adults. Yet, in pediatric heart failure, the majority of our therapeutic strategies, both medical and mechanical, are based on adult data, and progress within our field is somewhat stagnant when compared to adult therapies. This is due to the limited and sometimes conflicting published data on small numbers of pediatric heart failure patients. But in children the diversity in the underlying causes of heart failure, both from congenital and acquired heart disease make it difficult to extrapolate from adult trials. Overall, there has been lack of multi-center collaboration and data collection. In the November 2012 issue of Links, Dr Yuk Law wrote about these same challenges. He described how the growth within our field led to the development of the Pediatric Heart Failure Workforce, a subcommittee within the Pediatric Transplantation Council of the ISHLT. Over the past few years, the pediatric heart failure and transplant community has continued to grow and become more focused on developing research and therapies dedicated to heart failure in infants and children of all ages.

When faced with a child failing medical therapy and in need of mechanical support, I think most of us are quite jealous of our adult colleagues and their mechanical support options. The majority of centers treating advanced heart failure and performing heart transplants have become more and more comfortable using ECMO for short term support, but are placing ventricular assist devices earlier and more often with about 25% of transplanted pediatric patients being bridged with mechanical support in recent years (per the ISHLT annual report). The Berlin EXCOR, FDA approved for support in children, is the only option for babies and smaller children, but the size limits for the Heartware LVAD and Heartmate II LVAD are being pushed to give bigger children better long term therapy options.

In the July 2014 issue of Links, Dr. Janet Scheel and Dr. Angela Lorts highlighted the advances in pediatric mechanical support. Dr. Scheel discussed the PumpKIN trial, and NHLBI funded trial to assess the Jarvik 2000, a tiny continuous flow left ventricular assist device for infants and small children. Dr. Lorts gave an update on the progress with PEDIMACS, a registry that opened in 2012, dedicated to collecting data in the growing population of children supported on ventricular assist devices. The July 2014 issue also included the announcement of the monograph Volume 8: Guidelines for the Management of Pediatric Heart Failure. Currently, the ISHLT Pediatric Heart Failure Workforce is focusing their efforts on establishing a heart failure registry to capture prospectively the natural history of heart failure from cardiomyopathy and congenital heart disease. Until that data becomes available, the Workforce will also organize collaborative, multicenter cohort studies. A group looking into submitting a proposal to the NIH for funded studies has also spun off of the workforce. In preparation for the design of scientific studies, a survey to learn more about the current pediatric heart failure work force and training was conducted with the results to be published soon.

Interest in pediatric heart failure is also flourishing outside of the ISHLT. In September the 3rd annual Pediatric Heart Failure Summit took place in Cincinnati, OH. This conference is a two day event with presentations from leaders in the field highlighting recent data and advances surrounding pediatric heart failure and mechanical support.

In the past year, the American Heart Association (AHA) council on cardiovascular disease in the young (CVDY), with growing interest in pediatric heart failure, created a Pediatric Heart Failure Committee. The goal of this committee is to support the mission of the CVDY council to "improve the health of children with heart failure or cardiomyopathy through research, education, prevention, advocacy and quality improvement." The committee is supported by members of the CVDY council and from other councils within the American Heart Association, including a liaison with the ISHLT. The committee will focus on education and programming dedicated to pediatric heart failure for AHA scientific sessions and other conferences. The group will also explore opportunities to develop scientific statements and open the doors for collaboration with other pediatric heart failure groups.

The future is bright for the growing number of providers dedicated to taking care of children with heart failure, whatever the etiology may be. With continued momentum and collaboration within the different interest groups, we will be able to practice more evidence based medicine, learn from each other, and in the end, take better care of these fragile children. Yes ... the field is growing up. ■

Disclosure Statement: the author has no conflicts to report.

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