Wednesday, July 2, 2014

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!



Previous Blog Posts

Tuesday April 21st, 2017: Parent Scholarships NPC-QIC 2017

Monday, August 8, 2016: On Finding His Tribe

Thursday, November 19, 2015: You're the General Manager

Monday, July 20, 2015: Fontan Care Package Launch

Monday, June 8, 2015: SBH Supports Full Transparency in Outcomes Data

Wednesday, May 6, 2015: New Care Package Items

Wednesday, April 29, 2015: A Tea Just for You: Heart Mom Comfort Tea!

Monday, March 2, 2015: Parent Travel Scholarships - NPC-QIC 2015 Spring Learning Session!

Tuesday, February 17, 2015: NPC-QIC/SBH Response to HLHS Statistics Shared by the CDC

Monday, February 2, 2015: Fundraising with Heart: Tink & Key

Thursday, January 29, 2015: January 2015 NPC-QIC Action Period Call Update

Wednesday, January 28, 2015: Fundraising with Heart: The Baby Blue Sound Collective

Thursday, December 18, 2014: Sharing HOPE: An exciting opportunity

Tuesday, September 30, 2014: HLHS Collaborative: September's Action Period Call

Tuesday, August 26, 2014: Parent Travel Scholarships - NPC-QIC 2014 Fall Learning Session!

Monday, August 18, 2014: CHD Kids and School Special Services

Monday, August 11, 2014: Using Crisis to Create: The Asher James Foundation

Wednesday, July 2, 2014: HLHS Collaborative: June's Action Period Call

Monday, June 23, 2014: Pink for Paul!

Friday, June 13, 2014: Why There are No "Brothers by Heart"

Tuesday, May 13, 2014: What If...

Wednesday, April 2, 2014: HLHS Collaborative: March's Action Period Call

Wednesday, March 5, 2014: HLHS Collaborative: February's Action Period Call

Saturday, February 15, 2014: Shopping for a Cause

Thursday, February 6, 2014: HLHS Collaborative: January's Action Period Call

Friday, January 17, 2014: Research Opportunity: Prenatally Diagnosed Moms Need Apply!

Monday, January 6, 2014: HLHS Collaborative: December's Action Call

Friday, December 27, 2013: Dual Perspectives: Growing Up with HLHS

Wednesday, December 4, 2013: Take Action: Be Part of the Solution

Tuesday, December 3, 2013: Join Millions for #GivingTuesday

Monday, November 18, 2013: A Mother's Perspective: The Other Sibling

Wednesday, November 6, 2013: A Unique Opportunity with What to Expect

Tuesday, November 5, 2013: Time to Vote!

Friday, November 1, 2013: 2nd Annual Sisters by Heart Avon Fundraiser

Thursday, September 12, 2013: Possibilities: Cord Blood Banking

Tuesday, September 3, 2013: A Unique Partnership

Tuesday, August 6, 2013: Fontan Series: Kylan's Story

Monday, July 22, 2013: Fontan Series: Lily's Story

Monday, July 15, 2013: Fontan Series: Aly's Story

Monday, May 13, 2013: A Heartfelt Donation: Medical Masks in Anya's Memory

Monday, April 22, 2013: Parent's Perspective: What to Pack for the Hospital

Thursday, April 18, 2013: Getting a 2nd Opinion: An Inpatient Perspective

Monday, April 15, 2013: Getting a 2nd Opinion: An Outpatient Perspective

Saturday, February 9, 2013: It's February, Celebrate Black History Month!

Monday, February 4, 2013: A Heartfelt Donation: eBay Foundation

Friday, February 1, 2013: A Unique Collaboration: SBH and the NPC-QIC

Monday, January 28, 2013: NPC-QIC Winter Learning Session

Friday, December 21, 2012: A Mothers Perspective: Feeding issues

Wednesday, December 5, 2012: A Heartfelt Donation: Smart Mom Jewelry

Sunday, November 18, 2012: Heartfelt Donations: aden + anais and The Dorsett Family

Tuesday, November 13, 2012: Gifts from the Heart: Stella & Dot

Monday, November 5, 2012: Creative Donors: United Way Workplace Campaigns

Sunday, November 4, 2012: A Mother's Perspective: Healing a Hurting Marriage

Sunday, October 28, 2013: A Heartfelt Donation: Avon

Saturday, October 27, 2012: A Gift for Our Fighters

Monday, October 15, 2012: Stories of Hope: Tyler Sajdak

Monday, October 8, 2012: A Heartfelt Donation: The Mended Heart

Monday, September 24, 2012: Fun in the Sun: Year Two

Sunday, September 16, 2012: Creative Moms: Warrior Scrapbooking

September 11th, 2012: Remembering Our Heroes

June 6th, 2012: Top Ten Discharge List