NPC-QIC Action Period Call Update

Thanks again to Trent Neely (dad to Avery, HLHS), for January's call summary.  If you're not a member of NPC-QIC's HLHS Parent Advisory Facebook Page, please check it out.  It's a great place for updates and a simple avenue to engage in the HLHS collaborative.  For those new to the HLHS community, the National Pediatric Cardiology Quality Improvement Collaborative holds monthly calls to discuss ongoing work and action items to continue tackling HLHS and improving the treatment and outcomes for our children.

January 2015 Call Update

After a winter holiday break, the Action Period calls resumed with a flurry of activity! The call began with an announcement of three new centers to the Collaborative, bringing the total to 58 centers. Welcome UF Health Shands Children’s Hospital, Golisano Children's Hospital, and University of Minnesota Masonic Children's Hospital.
 
A report of research followed, with a study conducted through the NPC-QIC database, examined the timing of Stage 2 palliation. There is wide variety in the timing of the second surgery between centers and this study looked to evaluate any risks or benefits to an early or late timing of Stage 2. Of the data analyzed, there was a variation in timing that ranged from 3 ½ to 7 months with the early group having Stage 2 prior to about 5 months. There were some interesting findings that I’m sure will help centers think about the optimal timing of surgery and what shorter or longer wait times for the Glenn might translate to long-term. This research is currently being prepared for publication so look for it in an upcoming Research Explained from the NPC-QIC. An abstract is available here: http://circ.ahajournals.org/conte…/…/Suppl_2/A12605.abstract
 

An update on a new project to develop a Book of Hope through Empowered by Kids was then provided. This book will include stories from parents, patients, nurses, a cardiologist, and a surgeon to help newly diagnosed parents through their journey. Deadlines for submissions are January 31, 2015, so get your submissions in ASAP!  If you need further information, please read our recent blog post on the HLHS Book of Hope.

There was then a brief discussion of funding opportunities that the Collaborative is pursuing to help further the current work as well as the planned Phase 2 project. Phase 2 is moving forward and building upon Phase 1 which was limited to just the Interstage period. Phase 2 will focus on diagnosis through the first year of life and will include additional data about neuro-development and family quality of life.  Phase 2 will also incorporate parent reported data collection as well.

There is a lot of new and exciting developments for the Collaborative; it's energizing to see the ongoing work for HLHS children and families, and in turn, improving the care and treatment for all critical congenital heart defects.