Inspiring ACTION

After a heartbreaking experience, Liam and his family inspired providers across the country to rethink how they communicate and learn from one another. Now, with the ACTION collaborative, every patient has access to a healthcare community working together to provide the best care throughout their heart health journey.

Prior to 2017, stroke rates for heart failure patients with ventricular assist devices (VAD) was too high. On average, 1 in 3 patients would experience a stroke or neurological event, which in many cases can be fatal or lead to poor outcomes. The clinical community, patients and families, and industry had a common problem to fight together.  

Carolynn Sprague and her son Liam were one of these families. Liam had a stroke while on a VAD in 2013. Spurred by the desire to change this outcome for all patients and families, ACTION was formed in 2017 with 5 centers working together towards this common goal. 

First, we discovered that variation in care and outcomes exists across hospitals and ACTION sites. Specifically, there was a significant amount of variation in stroke rates between institutions (Fig 1).

Extreme variability in the rates of stroke amongst U.S. Pediatric hospitals.
Figure 1

This is thought to be driven by center volume and experience. This suggested that there was an opportunity to identify and implement best practices from those centers that have lower stroke rates, in order to improve the outcomes for children treated at all centers. The initial ACTION quality improvement project was focused on decreasing the high risk of stroke in children with heart failure that were treated with VADs. We have now expanded this quality improvement and learning health system methodology across our network and have expanded the scope to include other aspects of acute heart failure.

A Place of Comfort

My son was admitted to Cincinnati Children’s Hospital Medical Center on June 22, 2013 and discharged on May 1, 2014. While our journey was long, unexpected and full of twists and turns, we are forever grateful to have a happy ending. Returning to Cincinnati Children’s for follow-up appointments is something we as a family actually enjoy. You see, when we walk into the building we feel a sense of comfort. This hospital was our home for almost a year. The staff here became more like family and this is the place where our son received his new heart and a second chance at life. The Heart Failure/VAD team took care of our needs from admission to discharge. 

Carolynn, mom of Liam