HLHS Collaborative: December's Action Call

As mentioned last month, Sisters by Heart will be providing a summary of the dialogue (involving both clinicians and parents) during the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) Monthly Action Period Calls. 

For December, the action call began with an update on a newly formed Collaborative work group - a Transparency workgroup.   With great interest in Transparency, invitations were sent to approximately 15 cardiologists, nurses, and parents.  Most encouraging, this group will likely be comprised of a 50/50 split between health care professionals and parents.   The first objective of the Transparency group will be to discuss short and long term goals, legal matters, and then develop an update for the Spring Learning Sessions in Cincinatti.   The initial goal for centers involved in the collaborative will be to share data amongst themselves in order to drive quality improvement at a more rapid pace.  Co-leaders for the transparency work group are:  John Kuglar (cardiologist) and Stacey Lihn (parent).

The call also focused on a review of requirements for centers to maintain certification in the NPC-QIC and how data collection forms were modified to help streamline collected data. The data collected is the vital for the work that the collaborative does and a great deal of work goes into collecting the most appropriate information.

The main topic for December's call was Growth during the Interstage period. Growth of babies during this period is one of the vital pieces of data centers are using to help determine health and success of their patients. Centers implementing interventions, such as using scales at home, conducting a feeding evaluation, and providing red flags to parents, experienced improved growth of infants that they cared for. Centers used to think that HLHS babies just didn’t grow during the interstage.  Through the work of the collaborative, centers don’t accept this notion anymore.   December's call ended with a highlight of some of the work centers are doing to improve interstage growth.  

Thanks again, Trent Neely and all parents who participate on the monthly Action Period Calls for providing input, taking notes and preparing summaries for the HLHS community.