scholarly journals Power of a Learning Network in Congenital Heart Disease

2019 ◽  
Vol 10 (1) ◽  
pp. 66-71 ◽  
Author(s):  
Jeffrey B. Anderson ◽  
David W. Brown ◽  
Stacy Lihn ◽  
Colleen Mangeot ◽  
Katherine E. Bates ◽  
...  
Keyword(s):  
Pediatric Cardiology ◽  
Hospital Readmissions ◽  
Growth Failure ◽  
Medical Problems ◽  
Statistical Process ◽  
Data Share ◽  
Learning Network ◽  
Use Of Data ◽  
Interstage Mortality ◽  
Stage 1

Background: The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) formed to improve outcomes in infants with hypoplastic left heart syndrome. The collaborative sought to (1) decrease mortality, (2) reduce growth failure, and (3) reduce hospital readmissions due to major medical problems during the interstage period between discharge following stage 1 palliation (S1P) and admission for stage 2 palliation (S2P). Methods: The NPC-QIC is a learning network, coproduced by parents and clinicians, of 65 pediatric cardiology centers that contribute clinical data on care processes and outcomes to a shared registry. The adapted Breakthrough Series Model structure brings teams together regularly to review data, share lessons, and plan improvements. Outcomes are monitored using statistical process control methods. Results: Between 2008 and 2016, interstage mortality decreased by >40%, from 9.5% to 5.3%. Identification and use of a nutrition bundle led to improved infant growth, with a 28% reduction in interstage growth failure. The rate of serious hospital readmissions was low and did not significantly change. Importantly, a formed partnership with the parent group Sisters by Heart fostered the coproduction of tools and strategies and an emphasis on data transparency and outcomes. Conclusions: The NPC-QIC’s initial efforts led to improvements in interstage growth and mortality. The NPC-QIC has modeled the use of data for improvement and research, the value of coproduction with parents, and the concept “all teach, all learn,” demonstrating the power of the learning network model.

scholarly journals Identified mortality risk factors associated with presentation, initial hospitalisation, and interstage period for the Norwood operation in a multi-centre registry: a report from the National Pediatric Cardiology-Quality Improvement Collaborative

2013 ◽  
Vol 24 (2) ◽  
pp. 253-262 ◽  
Author(s):  
Russell R. Cross ◽  
Ashraf S. Harahsheh ◽  
Robert McCarter ◽  
Gerard R. Martin ◽  
Keyword(s):  
Risk Factors ◽  
Relative Risk ◽  
Pediatric Cardiology ◽  
Left Heart ◽  
Hypoplastic Left Heart ◽  
Quality Improvement Collaborative ◽  
Interstage Mortality ◽  
Independent Risk Factors ◽  
Stage 1 ◽  
Left Heart Syndrome

AbstractIntroductionDespite improvements in care following Stage 1 palliation, interstage mortality remains substantial. The National Pediatric Cardiology-Quality Improvement Collaborative captures clinical process and outcome data on infants discharged into the interstage period after Stage 1. We sought to identify risk factors for interstage mortality using these data.Materials and methodsPatients who reached Stage 2 palliation or died in the interstage were included. The analysis was considered exploratory and hypothesis generating. Kaplan–Meier survival analysis was used to screen for univariate predictors, and Cox multiple regression modelling was used to identify potential independent risk factors.ResultsData on 247 patients who met the criteria between June, 2008 and June, 2011 were collected from 33 surgical centres. There were 23 interstage mortalities (9%). The identified independent risk factors of interstage mortality with associated relative risk were: hypoplastic left heart syndrome with aortic stenosis and mitral atresia (relative risk = 13), anti-seizure medications at discharge (relative risk = 12.5), earlier gestational age (relative risk = 11.1), nasogastric or nasojejunal feeding (relative risk = 5.5), unscheduled readmissions (relative risk = 5.3), hypoplastic left heart syndrome with aortic atresia and mitral stenosis (relative risk = 5.2), fewer clinic visits with primary cardiologist identified (relative risk = 3.1), and fewer post-operative vasoactive medications (relative risk = 2.2).ConclusionInterstage mortality remains substantial, and there are multiple potential risk factors. Future efforts should focus on further exploration of each risk factor, with potential integration of the factors into surveillance schemes and clinical practice strategies.

scholarly journals In-hospital interstage improves interstage survival after the Norwood stage 1 operation

2020 ◽  
Vol 57 (6) ◽  
pp. 1113-1121
Author(s):  
Guido Michielon ◽  
Giovanni DiSalvo ◽  
Alain Fraisse ◽  
Julene S Carvalho ◽  
Sylvia Krupickova ◽  
...  
Keyword(s):  
Survival Rate ◽  
Mortality Rate ◽  
Speckle Tracking ◽  
Longitudinal Strain ◽  
Strong Predictor ◽  
Kaplan Meier ◽  
Current Series ◽  
Interstage Mortality ◽  
Stage 1 ◽  
Left Heart Syndrome

Abstract OBJECTIVES The interstage mortality rate after a Norwood stage 1 operation remains 12–20% in current series. In-hospital interstage facilitates escalation of care, possibly improving outcome. METHODS A retrospective study was designed for hypoplastic left heart syndrome (HLHS) and HLHS variants, offering an in-hospital stay after the Norwood operation until the completion of stage 2. Daily and weekly examinations were conducted systematically, including two-dimensional and speckle-tracking echocardiography. Primary end points included aggregate survival until the completion of stage 2 and interstage freedom from escalation of care. Moreover, we calculated the sensitivity and specificity of speckle-tracking echocardiographic myocardial deformation in predicting death/transplant after the Norwood procedure. RESULTS Between 2015 and 2019, 33 neonates with HLHS (24) or HLHS variants (9) underwent Norwood stage 1 (31) or hybrid palliation followed by a comprehensive stage 2 operation (2). Stage 1 Norwood–Sano was preferred in 18 (54.5%) neonates; the classic Norwood with Blalock–Taussig shunt was performed in 13 (39.4%) neonates. The Norwood stage 1 30-day mortality rate was 6.2%. The in-hospital interstage strategy was implemented after Norwood stage 1 with a 3.4% interstage mortality rate. The aggregate Norwood stage 1 and interstage Kaplan–Meier survival rate was 90.6 ± 5.2%. Escalation of care was necessary for 5 (17.2%) patients at 2.5 ± 1.2 months during the interstage for compromising atrial arrhythmias (2), Sano-shunt stenosis (1) and pneumonia requiring a high-frequency oscillator (2); there were no deaths. A bidirectional Glenn (25) or a comprehensive-Norwood stage 2 (2) was completed in 27 patients at 4.7 ± 1.2 months with a 92.6% survival rate. The overall Kaplan–Meier survival rate is 80.9 ± 7.0% at 4.3 years (mean 25.3 ± 15.7 months). An 8.7% Δ longitudinal strain 30 days after Norwood stage 1 had 100% sensitivity and 81% specificity for death/transplant. CONCLUSIONS In-hospital interstage facilitates escalation of care, which seems efficacious in reducing interstage Norwood deaths. A significant reduction of longitudinal strain after Norwood stage 1 is a strong predictor of poor outcome.

Mapping and Monitoring Bullying and Violence

2017 ◽  
Author(s):  
Ron Astor ◽  
Rami Benbenishty
Keyword(s):  
Suicide Ideation ◽  
Well Being ◽  
Data Share ◽  
Staff Members ◽  
Personal Property ◽  
Use Of Data ◽  
Education Leaders ◽  
Multiple Audiences ◽  
Visual Record ◽  
Ongoing Monitoring

Mapping and Monitoring Bullying and Violence is a guidebook for district and school education leaders and professionals to reduce incidents of violence and bullying and enhance students' well-being. Written in a step-by-step format, the text is designed to assist in collecting and making better use of data on non-academic issues in schools, such as reports of victimization, weapon and drug possession, theft of personal property, suicide ideation, and other areas. The authors advocate an ongoing monitoring approach that involves collecting information from multiple audiences about what is taking place in and around schools. One part of this process is mapping, which gives school leaders, students, and staff members a visual record of areas of the campus considered safe, alongside those that students view to be places where they might encounter bullying, harm, or trouble. Other common parts of such systems are surveys among students, educators, and parents. The authors include practical examples of how to design such a system, gather current information, analyze and display the data, share it with different audiences, and use it to find solutions. Ultimately, this timely guidebook is a must-have for social workers, psychologists, counselors, nurses, and others working to improve safety in schools.

Abstract 9747: Truth in Advertising: Are We Providing Consumers With the Proper Information to Participate in Decision Making About Hypoplastic Left Heart Therapies?

Circulation ◽  
2015 ◽  
Vol 132 (suppl_3) ◽  
Author(s):  
Richard A Friedman
Keyword(s):  
Health Informatics ◽  
Survey Study ◽  
Mortality Data ◽  
Published Data ◽  
Left Heart ◽  
Hypoplastic Left Heart ◽  
Data Set ◽  
Interstage Mortality ◽  
Prospective Parent ◽  
Stage 1

Introduction: Consumer Health Informatics has become an integral part of healthcare in 2015. The purpose of this survey study is to examine the information available on the internet to a parent(s) of a fetus diagnosed in utero with hypoplastic left heart disease (HLHD) and compare those to scientific, peer reviewed published data. Specifically, is the the provider data complete enough for prospective parent(s) to make a rational decision as to whether to proceed with a 3 stage repair or choose another option. Hypothesis: The formally untested hypothesis is that there is a signifcant "gap" between what is actually known to providers and what is presented to prospective parent(s)on provider websites. Methods: Using the list of the top 10 rated Pediatric Cardiovascular programs as ranked by the U.S. News World Report (USNWR) we collected the published information with respect to: # cases of HLHD operated on for Stage 1 Norwood at the hospital/program in question, Stage 2 Glenn shunt and Stage 3 Fontan; mortality at each stage ; interstage mortality ; mortality data for patients completing all 3 stages ; neurodevelopemntal outcomes and other morbidities. For comparison, we used published data on outcomes of HLHD surgery and follow-up from the Society for Thoracic Surgery as it encompasses the largest collection of datasets from many U.S. programs. We compared the STS data set to the publsihed information from the websites.. Results: Websites did not present the statistical data presented by the STS. In addition, no website listed the exact incidence of their interstage mortality, neurodevelopemntal outcomes nor morbidities at their site. Conclusions: 1. Information published on websites of the top 10 USNWR programs provide information that tell only part of the story of outcomes for HLHD. 2. Critical pieces of information such as interstage mortality and significant morbidities, are not reported. 3.We must reasses the amount and type of data presented on hospital/program websites

Examining variation in interstage mortality rates across the National Pediatric Cardiology Quality Improvement Collaborative: do lower-mortality centres have lower-risk patients?

2018 ◽  
Vol 28 (8) ◽  
pp. 1031-1036 ◽  
Author(s):  
Katherine E. Bates ◽  
Sunkyung Yu ◽  
Ray Lowery ◽  
Sara K. Pasquali ◽  
David W. Brown ◽  
...  
Keyword(s):  
Risk Factors ◽  
Quality Improvement ◽  
Lower Risk ◽  
Pediatric Cardiology ◽  
Mortality Rates ◽  
Lower Mortality ◽  
Baseline Risk ◽  
Quality Improvement Collaborative ◽  
Risk Patients ◽  
Interstage Mortality

AbstractBackgroundAlthough interstage mortality for infants with hypoplastic left heart syndrome has declined within the National Pediatric Cardiology Quality Improvement Collaborative, variation across centres persists. It remains unclear whether centres with lower interstage mortality have lower-risk patients or whether differences in care may explain this variation. We examined previously established risk factors across National Pediatric Cardiology Quality Improvement Collaborative centres with lower and higher interstage mortality rates.MethodsLower-mortality centres were defined as those with >25 consecutive interstage survivors. Higher-mortality centres were defined as those with cumulative interstage mortality rates >10%, which is a collaborative historic baseline rate. Baseline risk factors and perioperative characteristics were compared.ResultsSeven lower-mortality centres were identified (n=331 patients) and had an interstage mortality rate of 2.7%, as compared with 13.3% in the four higher-mortality centres (n=173 patients, p<0.0001). Of all baseline risk factors examined, the only factor that differed between the lower- and higher-mortality centres was postnatal diagnosis (18.4 versus 31.8%, p=0.001). In multivariable analysis, there remained a significant mortality difference between the two groups of centres after adjusting for this variable: adjusted mortality rate was 2.8% in lower-mortality centres compared with 12.6% in higher-mortality centres, p=0.003. Secondary analyses identified multiple differences between groups in perioperative practices and other variables.ConclusionsVariation in interstage mortality rates between these two groups of centres does not appear to be explained by differences in baseline risk factors. Further study is necessary to evaluate variation in care practices to identify targets for improvement efforts.

Interstage Outcomes in Infants With Single Ventricle Heart Disease Comparing Home Monitoring Technology to Three-Ring Binder Documentation: A Randomized Crossover Study

2018 ◽  
Vol 9 (3) ◽  
pp. 305-314 ◽  
Author(s):  
Michael Bingler ◽  
Lori A. Erickson ◽  
Kimberly J. Reid ◽  
Brian Lee ◽  
James O’Brien ◽  
...  
Keyword(s):  
Resource Utilization ◽  
Single Ventricle ◽  
Monitoring Program ◽  
Home Monitoring ◽  
Growth Failure ◽  
High Acuity ◽  
Interstage Mortality ◽  
Access To Data ◽  
To Receive ◽  
Randomized Crossover Study

Background: Interstage outcomes for infants with single ventricle remain suboptimal. We have previously described a tablet PC-based platform Cardiac High Acuity Monitoring Program (CHAMP) for remote monitoring which provides immediate access to data, videos, and instant alerts to our single ventricle care team. Methods: This study compares traditional three-ring binder monitoring (Binder) to CHAMP using a randomized crossover design to evaluate mortality, resource utilization, and caregiver experience. At discharge, all single ventricle infants were monitored using Binder and randomized to receive CHAMP at either one or two months postdischarge. One month after randomization, caregivers could choose either Binder or CHAMP for the remainder of the interstage period. Caregivers experience was recorded using surveys. Results: Enrollment included 31 single ventricle infants from May 2014 to June 2015. There was no interstage mortality over 4,911 total interstage days (median: 144/patient). Of 73 readmissions, 45 were unplanned. Of the initial 23 unplanned readmissions, 13 were found to have been based on data obtained exclusively through CHAMP (as instant alerts or based on data review) rather than caregiver concerns. Due to concerns regarding patient safety, additional enrollment was stopped. The CHAMP use was associated with significantly fewer unplanned intensive care unit days/100 interstage days, shorter delays in care, lower resource utilization at readmissions, and lower incidence of interstage growth failure and was preferred by a majority of caregivers. Conclusions: These findings suggest that CHAMP may offer benefits over Binder (improved interstage outcomes, delays in care, and caregiver experience). These findings should be tested across multiple centers in larger populations.

Feeding, growth, nutrition, and optimal interstage surveillance for infants with hypoplastic left heart syndrome

2011 ◽  
Vol 21 (S2) ◽  
pp. 59-64 ◽  
Author(s):  
David A. Hehir ◽  
David S. Cooper ◽  
Elizabeth M. Walters ◽  
Nancy S. Ghanayem
Keyword(s):  
Hypoplastic Left Heart Syndrome ◽  
Home Monitoring ◽  
Failure To Thrive ◽  
Normal Growth ◽  
Left Heart ◽  
Hypoplastic Left Heart ◽  
Interstage Mortality ◽  
Annual International Symposium ◽  
Stage 1 ◽  
Left Heart Syndrome

AbstractImprovement in operative survival of patients with hypoplastic left heart syndrome has led to increasing emphasis on prevention of interstage mortality. Many centres have improved interstage results through programmes of home monitoring following discharge after the Norwood (Stage 1) operation. Experience with heightened interstage surveillance has identified failure to thrive during infancy as a modifiable risk factor for this population, one that has been linked to concerning outcomes at subsequent palliative surgeries. Ensuring normal growth as an infant has thus become a priority of management of patients with functionally univentricular hearts. Herein, we review the existing evidence for best practices in interstage surveillance and optimal nutrition in infants with functionally univentricular hearts. In addition, we highlight data presented at HeartWeek 2011, from Cardiology 2011, the 15th Annual Update on Pediatric and Congenital Cardiovascular Disease, and the 11th Annual International Symposium on Congenital Heart Disease.

Abstract 12605: Center Variability in Timing of Stage 2 Palliation and Association With Interstage Mortality: A Report From the National Pediatric Cardiology Quality Improvement Collaborative

Circulation ◽  
2014 ◽  
Vol 130 (suppl_2) ◽  
Author(s):  
Garick Hill ◽  
Nancy Rudd ◽  
Nancy Ghanayem ◽  
David Hehir ◽  
Peter Bartz
Keyword(s):  
Quality Improvement ◽  
Length Of Stay ◽  
Pediatric Cardiology ◽  
Severity Of Illness ◽  
Hospital Length ◽  
Hospital Length Of Stay ◽  
Optimal Timing ◽  
Quality Improvement Collaborative ◽  
Interstage Mortality ◽  
The Impact

Introduction: The interstage period from discharge following stage 1 palliation (S1P) until stage 2 palliation (S2P) remains high risk. Significant variability between institutions exists around the timing of S2P. We sought to describe the variability in a multi-institution cohort and assess its association with interstage mortality. Methods: The National Pediatric Cardiology Quality Improvement Collaborative registry, with data from 52 centers, was queried. Patients undergoing a hybrid S1P, transplanted prior to S2P, lost to follow up prior to S2P or deemed not candidates for S2P were excluded. Only centers with 10 or greater patients meeting eligibility were included to reduce the impact of outliers. Centers were divided based on median age at S2P into early (n=15) and late (n=16) centers using a cutoff of 153 days. Groups were compared using Chi-squared or Wilcoxon rank sum test. Results: The final cohort included 789 patients from 31 centers. Center specific median age at S2P varied from 109 to 214 days, with a center mean of 158 ± 27 days. At S1P, the late centers had a higher prevalence of preoperative ventilation (34.7% vs. 26.9%, p=0.02) and longer average post-S1P duration of intubation (14.4 ± 19.7 vs. 10.2 ± 11.4 days, p<0.001) and S1P hospital length of stay (48.5 ± 30.4 vs. 38.5 ± 22.3 days, p<0.0001). Interstage mortality was significantly higher in centers performing late vs. early S2P (9.9% vs. 5.7%, p=0.03). Interstage event rate (late: 8.2 vs. early: 5.8 deaths per 10000 interstage days) was not different by group (p=0.26), but interstage duration was significantly longer (133.9 ± 71.5 vs. 103.4 ± 37.8 days, p<0.0001) in the late group. Survival to hospital discharge (98.9% in both groups, p>0.98) and hospital length of stay following S2P (late: 15.6 ± 22.3 vs. early: 13.7 ± 22.4, p=0.68) were similar between groups. Conclusions: In a large multi-institution collaborative, the median age at S2P varies between centers. Centers performing S2P at a later median age have higher interstage mortality. This may be in part due to a higher severity of illness, reflected by higher S1P morbidity in this group. Although optimal timing of S2P remains unclear, centers performing early S2P did not experience worse S2P outcomes, and experienced less interstage mortality.

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