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Key Findings: Variability in timing of stage 2 palliation between centers and association with later stage 2 palliation and higher interstage mortality
  • 2016
  • Research Explained

 

Key Findings: Variability in timing of stage 2 palliation between centers and association with later stage 2 palliation and higher interstage mortality

_________

Garick Hill, Nancy Rudd, Nancy Ghanayem, David Hehir and Peter Bartz published a study in Pediatric Cardiology:  “Center variability in timing of stage 2 palliation and association with interstage mortality: A report from the National Pediatric Cardiology Quality Improvement Collaborative”

Main Finding from this Study:

Patients with hypoplastic left heart syndrome and other similar single ventricle lesions require a series of surgeries to allow the single ventricle to pump blood to the body. The highest risk time is following stage 1 palliation until stage 2 palliation. This time period includes the interstage period which is the time from hospital discharge following stage 1 palliation until the time of stage 2 palliation. The optimal timing of stage 2 palliation is unknown...

Key Findings: Variability in timing of stage 2 palliation between centers and association with
  • 2016

RESEARCH EXPLAINED

Key Findings: Variability in timing of stage 2 palliation between centers and association with later stage 2 palliation and higher interstage mortality

Garick Hill, Nancy Rudd, Nancy Ghanayem, David Hehir and Peter Bartz published a study in Pediatric Cardiology:  “Center variability in timing of stage 2 palliation and association with interstage mortality: A report from the National Pediatric Cardiology Quality Improvement Collaborative”

Main Finding from this Study:

Patients with hypoplastic left heart syndrome and other similar single ventricle lesions require a series of surgeries to allow the single ventricle to pump blood to the body. The highest risk time is following stage 1 palliation until stage 2 palliation. This time period includes the interstage period which is the time from hospital discharge following stage 1 palliation until the time of stage 2 palliation. The optimal timing of stage 2 palliation is unknown...

Key Findings: Variability in timing of stage 2 palliation between centers and association with
  • 2016
  • Research Explained

 

Key Findings: Variability in timing of stage 2 palliation between centers and association with later stage 2 palliation and higher interstage mortality

_________

Garick Hill, Nancy Rudd, Nancy Ghanayem, David Hehir and Peter Bartz published a study in Pediatric Cardiology:  “Center variability in timing of stage 2 palliation and association with interstage mortality: A report from the National Pediatric Cardiology Quality Improvement Collaborative”

Main Finding from this Study:

Patients with hypoplastic left heart syndrome and other similar single ventricle lesions require a series of surgeries to allow the single ventricle to pump blood to the body. The highest risk time is following stage 1 palliation until stage 2 palliation. This time period includes the interstage period which is the time from hospital discharge following stage 1 palliation until the time of stage 2 palliation. The optimal timing of stage 2...

Research Explained: Key Findings: Variability in timing of stage 2 palliation between centers and association with later stage 2 palliation and higher interstage mortality
  • 2016

Key Findings: Variability in timing of stage 2 palliation between centers and association with later stage 2 palliation and higher interstage mortality

_________

Garick Hill, Nancy Rudd, Nancy Ghanayem, David Hehir and Peter Bartz published a study in Pediatric Cardiology:  “Center variability in timing of stage 2 palliation and association with interstage mortality: A report from the National Pediatric Cardiology Quality Improvement Collaborative”

Main Finding from this Study:

Patients with hypoplastic left heart syndrome and other similar single ventricle lesions require a series of surgeries to allow the single ventricle to pump blood to the body. The highest risk time is following stage 1 palliation until stage 2 palliation. This time period includes the interstage period which is the time from hospital discharge following stage 1 palliation until the time of stage 2 palliation. The optimal timing of stage 2 palliation is unknown and varies...

The Association between Digoxin Use and Reduced Interstage Mortality
  • 2016
  • Research Explained

Research Explained:  The Association between Digoxin Use and Reduced Interstage MortalityAn Evaluation of Two National Databases

Background of the Study Questions and DigoxinWhen the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) was formed in 2006, it had an initial goal to reduce interstage mortality for patients with Hypoplastic Left Heart Syndrome (HLHS) and other similar conditions. This was done by putting into place various quality improvement projects aimed at improving and standardizing care as well as evaluting the data stored in the database to examine any factors associated with interstage mortality. 

During one of these evaluations there was some early evidence that the use of digoxin was associated with lower mortality during the interstage period.  It was an incredibly preliminary finding but one that became worth studying in more detail.  Digoxin is a very old medication, initially described in 1780 as it is an...

Transitioning to Home for the Interstage Period: Video by Sisters by Heart
  • 2013
To: You, From: Us | A Gift of Stories from Parents & Patients with HLHS.

We share our journeys with you to give you hope and to offer encouragement. As you’ll see, individuals with HLHS can and do live full and active lives. A diagnosis of HLHS is not the end. It is just the beginning. Welcome to the journey.  

This book is a joint project of the National Pediatric Cardiology Quality Improvement Collaborative and Sisters by Heart. The book can be found here.  

Single Ventricle Q & A | A Guide to Communicating with your Child’s Care Team
  • Clinical

This booklet was prepared by NPC-QIC and Sisters by Heart, a parent non-profit organization, as a guide for questions to ask the cardiac team and surgeon regarding your child’s care.  Please click here to view the booklet.

RESEARCH EXPLAINED | Association of Home Monitoring with Interstage Mortality, Readmissions, and Weight Gain: A Multicenter Study from the National Pediatric Cardiology Quality Improvement Collaborative.
  • 2014
  • Research Explained

http://jaha.ahajournals.org/search?fulltext=Digoxin+Use+Is+Associated+With+Reduced+Interstage+Mortality+in&submit=yes&x=13&y=7The Journal of the American College of Cardiology published a study in April 2014: "Association of Home Monitoring with Interstage Mortality, Readmissions, and Weight Gain: A Multicenter Study from the National Pediatric Cardiology Quality Improvement Collaborative." The NPC-QIC Research and Publication Committee reviewed this article, and a summary of the findings can be found here.  

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RESEARCH EXPLAINED | Reexamining Interstage Home Monitoring after the Norwood Operation
  • 2015
  • Research Explained

The journal Circulation published a study in June 2015: "Reexamining Interstage Home Monitoring after the Norwood Operation".  The NPC-QIC Research and Publication Committee has reviewed this article and a summary of the findings can be found here.

*Parent and clinician members of the NPC-QIC Research and Publication Committee develop Research Explained summaries to assist parents and families in understanding research findings.

RESEARCH EXPLAINED | Factors Associated with Neurodevelopment for Children with Single Ventricle Lesions
  • 2014
  • Clinical
  • Research Explained

The Journal of Pediatrics published a study in September, 2014: “Factors Associated with Neurodevelopment for Children with Single Ventricle Lesions”. A summary of the findings can be found here

 

*Parent and clinician members of the NPC-QIC Research and Publication Committee develop these summaries to assist parents and families in understanding research findings.

Things Hospitals can do to Best Prepare a Parent for the Interstage
  • Clinical
  • Improvement Science

Things Hospitals can do to Best Prepare a Parent for the Interstage - from Sisters by Heart:

 

  • All parents should be armed with an interstage monitoring program. All parents should be armed with an interstage monitoring program and the necessary supplies for interstage care and monitoring: Pulse ox machine, infant scale, care binder or dedicated pages to record specific information (BP/Sats/Weight/intake, meds given, etc.). Most interstage parents feel that all of these supplies are necessary tools that help parents track changes and concerns during the interstage period. “Interstage monitoring” training should begin in the step-down unit so parents can get the hang of it for a few days prior to discharge.
  • ...
Suggested Organizations that can Provide Help

Our Parents suggest these organizations that can provide help:

  • Sisters by Heart | Supports newly-diagnosed HLHS families (both expectant and newborn) by providing complimentary care packages and a supportive network of HLHS families.
  • Beads of Courage | Through the use of strings of beads representing medical procedures, helps children with serious illness record, tell and own their stories of survival.
  • Mended Little Hearts | A support program for parents of children with heart defects and heart disease. Offers resources and a supportive network of families.
  • ...
Questions to Ask When Selecting Your Pediatrician
  • Clinical

Our parents suggest that you ask these questions when you are selecting a pediatrician:

  • Does your medical staff (Nurses, Physicians Assistants, etc.) have experience with single ventricle/complex congenital heart disease patients?
  • Do you have experience taking care of and coordinating care for children with complex congenital heart disease?
  • Will you accommodate special appointment times to reduce my child’s exposure to illness?
  • How will you communicate with my child’s Cardiologist?...