Research Explained

Differences in Midterm Outcomes in Infants with Hypoplastic Left Heart Syndrome Diagnosed with Necrotizing Enterocolitis, NPCQIC Database Analysis. 

Research Explained: Reintervention following stage 1 palliation: a report from the NPC-QIC Registry
Reintervention following stage 1 palliation: a report from the NPC-QIC Registry
Authors: Matthew W. Buelow, MD, Nancy Rudd, NP, Jena Tanem, NP, Pippa Simpson, PhD, Peter Bartz, MD, Garick Hill, MD.  Published in Congenital Heart Disease 2018 Aug 10.

Research Explained:  Examining variation in interstage mortality rates across the National Pediatric Cardiology Quality Improvement Collaborative: Do lower mortality centers have lower risk patients?   Authors: KE Bates, S Yu, R Lowery, SK Pasquali, DW Brown, PB Manning, K Uzark Published in Cardiology in the Young 21 June 2018

Practice Trends in HLHS. Wally Carlo, MD and Anne Dee Weisdorfer, parent. 2017. One of the goals of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) is to reduce practice variation, which then may improve patient outcomes. The NPC-QIC has reported a reduction in interstage mortality between post-Norwood hospital discharge and the Glenn surgery. This important reduction could be due to many different factors such as evolution of surgical practice, improved home monitoring, improved nutrition, and shortened interstage period.

Risk Factors for Unanticipated Readmissions During the Interstage: A Report From the National Pediatric Cardiology Quality Improvement Collaborative. Matt Files, MD and Colleen Melchiorre, parent. 2017. The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) had an initial primary goal of reducing the number of children with Hypoplastic Left Heart Syndrome (HLHS) and other similar conditions who die between the first and second surgeries (interstage). This study is one of the various quality improvement projects NPC-QIC has undertaken to improve the care of these babies.   

Feeding Approaches in Single Ventricle Infants: A Survey of 46 Centers. Clifford Cua, MD and Dawn Mazzanti, parent. 2017. This survey demonstrated that wide differences in feeding practices exist among the participating centers in the NPC-QIC though some common themes were present for most of the centers. 

Psychiatric Disorders in Adolescents with Single Ventricle Congenital Heart Disease.  Sinai C. Zyblewski, MD and Amy Willis, parent. 2017.

Key Findings:  Early identification and treatment of psychiatric symptoms is important medical care for all children and adolescent with critical CHD.​

Interstage Weight Gain Is Associated With Survival After First-Stage Single-Ventricle Palliation

Ann Thorac Surg 2017;104:674–80
The Society of Thoracic Surgeons

Variability of antithrombotics use in patients with hypoplastic left heart syndrome and its variants following first- and second-stage palliation surgery: a national report using the National Pediatric Cardiology Quality Improvement Collaborative registry Sinai C. Zyblewski, MD and Dawn Mazzanti, parent

Published in Cardiology in the Young 2017, Volume 27, pages 731-738

School Age Test Proficiency and Special Education After Congenital Heart Disease Surgery in Infancy. Muley et al. have just published a study in the Journal of Pediatrics looking at the school performance of children who had congenital heart disease surgery as infants.

Randomized controlled trials in children's heart surgery in the 21st century: a systematic review.  Nigel E Drury, Akshay J Patel, Nicola K Oswald, Cher-Rin Chong, John Stickley, David J Barron, Timothy J Jones. European Journal of Cardio-Thoracic Surgery, Volume 53, Issue 4, 1 April 2018, Pages 724–731

NPC-QIC Research Variability of Stage 2 Palliation.  From article: Center variability in timing of stage 2 palliation and association with interstage mortality: A report from the National Pediatric Cardiology Quality Improvement Collaborative.  Garrick Hill, Nancy Rudd, Nancy Ghanayem, David Hehir and Peter Bartz, Pediatric Cardiology, July 2016

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

 

The Association between Digoxin Use and Reduced Interstage Mortality. An Evaluation of Two National Databases. Vergales, Jeffrey, 2016. The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) had an initial primary goal of reducing interstage mortality for patients with Hypoplastic Left Heart Syndrome (HLHS) and similar conditions. This was done by putting into place various quality improvement projects aimed at refining and standardizing care as well as building a database to answer questions such as whether there are any factors associated with interstage mortality.

Reexamining Interstage Home Monitoring after the Norwood Operation. The journal Circulation published this study in June 2015.  While the authors did not find a strong association between the recommended frequency of measuring saturations and weights and improvements in interstage mortality rates, it does not mean that these programs are not beneficial. It simply means that we still are not sure which interventions are the key ones and may not be appreciating how complicated interstage programs are to evaluate.

Site of interstage outpatient care and growth after the Norwood operation. Cardiology in the Young published a study online on January 2015 from the article: Site of interstage outpatient care and growth after the Norwood operation. Patel MD, Uzark K, Yu S, Donohue J, Pasquali SK, Schidlow D, Brown DW, Gelehrter S.Cardiol Young. 2015 Jan 2:1-8. Key Findings: Comparison of growth in Single-Ventricle infants followed for interstage care at surgical centers versus non-surgical centers

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