HLHS Collaborative: June's Action Period Call

The Action Period call started as usual, with the typical data review.  For those who have allowed your center to share data with the Collaborative, it is collected for research and quality improvement.  To date there are 1304 patients in the registry.  Despite the typical data review, the focus was on the mortality rate because decreasing mortality is one of the primary goals.  Prior to the inception of the Collaborative in 2008, interstage mortality rates in the medical literature were around 10-15%.  The NPCQIC mortality rate at times seemed to hover around 10%.  However, when looking at all the data, it shows that the mortality from 2008 to 2014 is 8.1%.  Then came the big news, when looking at a more recent period, from January 2013 to May 2014 the Collaborative interstage mortality rate was 6%!  This was the first time that the Collaborative was able to statistically show a reduction in mortality.  The thought is that by working together, the involved centers were able to improve care processes that impact care.  There was excitement and celebration, but also a humbleness that 6% is still not good enough.  This is only the mortality rate for infants from Norwood discharge through the interstage period to Glenn surgery.  Moving forward there will be a continued focus on this interstage time period but also working with clinicians who care for these infants during this earlier time frame to find additional ways to decrease mortality.  It is always encouraging to see practitioners get excited about accomplishments and then get right back to work to find more ways to improve, especially when it directly impacts the care of your own child. 

 After the big news the focus shifted to a second main goal of the Collaborative, caloric intake.  The discussion revolved around how centers document caloric intake and weight gain for all infants they see.  Representatives from Advocate Children’s, Primary Children’s, and LeBonheur Children’s all shared ways that they track caloric intake and weight gain as well as who is responsible for doing so.  Advocate Children’s tracks it like other vital signs like blood pressure and heart rate to give an example of the importance this has. 

 The call ended with a number of announcements.  Nemours A.I. DuPont Hospital for Children in Wilmington, Delaware is the latest addition to the Collaborative bringing the total number of centers to 55.  The fall Learning Session will be on November 7 & 8 in Cincinnati.  The final announcement was that the Parent Page on the NPC-QIC website is under construction to help improve the resources available for parents.  After that all signed off to get back to improving care with a heartfelt thanks from all of the parents!