Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC).

The European Congenital Heart Surgeons Association (ECHSA) Congenital Database (CD) is the second largest clinical pediatric and congenital cardiac surgical database in the world and the largest in Europe, where various smaller national or regional databases exist. Despite the dramatic increase in interventional cardiology procedures over recent years, only scattered national or regional databases of such procedures exist in Europe. Most importantly, no congenital cardiac database exists in the world that seamlessly combines both surgical and interventional cardiology data on an international level; therefore, the outcomes of surgical and interventional procedures performed on the same or similar patients cannot easily be tracked, assessed, and analyzed. In order to fill this important gap in our capability to gather and analyze information on our common patients, ECHSA and The Association for European Paediatric and Congenital Cardiology (AEPC) have embarked on a collaborative effort to expand the ECHSA-CD with a new module designed to capture data about interventional cardiology procedures. The purpose of this manuscript is to describe the concept, the structure, and the function of the new AEPC Interventional Cardiology Part of the ECHSA-CD, as well as the potentially valuable synergies provided by the shared interventional and surgical analyses of outcomes of patients. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow centers to have access to robust surgical and transcatheter outcome data from their own center, as well as robust national and international aggregate outcome data for benchmarking. Each contributing center or department will have access to their own data, as well as aggregate data from the AEPC Interventional Cardiology Part of the ECHSA-CD. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow cardiology centers to have access to aggregate cardiology data, just as surgical centers already have access to aggregate surgical data. Comparison of surgical and catheter interventional outcomes could potentially strengthen decision processes. A study of the wealth of information collected in the database could potentially also contribute toward improved early and late survival, as well as enhanced quality of life of patients with pediatric and/or congenital heart disease treated with surgery and interventional cardiac catheterization across Europe and the world.

Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC).

The European Congenital Heart Surgeons Association (ECHSA) Congenital Database (CD) is the second largest clinical pediatric and congenital cardiac surgical database in the world and the largest in Europe, where various smaller national or regional databases exist. Despite the dramatic increase in interventional cardiology procedures over recent years, only scattered national or regional databases of such procedures exist in Europe. Most importantly, no congenital cardiac database exists in the world that seamlessly combines both surgical and interventional cardiology data on an international level; therefore, the outcomes of surgical and interventional procedures performed on the same or similar patients cannot easily be tracked, assessed, and analyzed. In order to fill this important gap in our capability to gather and analyze information on our common patients, ECHSA and The Association for European Paediatric and Congenital Cardiology (AEPC) have embarked on a collaborative effort to expand the ECHSA-CD with a new module designed to capture data about interventional cardiology procedures. The purpose of this manuscript is to describe the concept, the structure, and the function of the new AEPC Interventional Cardiology Part of the ECHSA-CD, as well as the potentially valuable synergies provided by the shared interventional and surgical analyses of outcomes of patients. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow centers to have access to robust surgical and transcatheter outcome data from their own center, as well as robust national and international aggregate outcome data for benchmarking. Each contributing center or department will have access to their own data, as well as aggregate data from the AEPC Interventional Cardiology Part of the ECHSA-CD. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow cardiology centers to have access to aggregate cardiology data, just as surgical centers already have access to aggregate surgical data. Comparison of surgical and catheter interventional outcomes could potentially strengthen decision processes. A study of the wealth of information collected in the database could potentially also contribute toward improved early and late survival, as well as enhanced quality of life of patients with pediatric and/or congenital heart disease treated with surgery and interventional cardiac catheterization across Europe and the world.

Facilitators and barriers of physical activity participation in children with a single ventricle physiology: a mixed-methods study.

BACKGROUND: The present study focuses on assessing the physical activity level of children with Fontan circulation for Hypoplastic Left Heart Syndrome and identifying potential barriers and facilitators toward their participation in physical activity. PATIENTS AND METHODS: Seven children aged 5-16 years (mean (SD) 8.8 (3.7) years) with a Fontan procedure for hypoplastic left heart syndrome, their parents (n = 7), and siblings (n = 1) were recruited. Data were collected using a mixed-methods approach: (i) children wore an activity monitor for 7 days to record physical activity, with sedentary time and level of activity calculated from accelerometer data; (ii) children completed a bespoke questionnaire recording limitations in physical activity; (iii) parents completed a semi-structured interview discussing perceptions about their child's physical activity participation. Qualitative data were analysed using thematic analysis. RESULTS: Activity monitors data recorded highly active children with a mean (SD) of 153(36) minutes/day spent in moderate-to-vigorous physical activity. Time spent in sedentary behaviour was also high (57.5% of total accelerometer wearing-time). Four key themes relating to parental perceptions of physical activity were identified: (i) A new lease of life -post-Fontan; (ii) Setting limits - managing limitations; (iii) The wider world - how others set limits; and (iv) "I fear the future" - parental concerns. CONCLUSION: Following completion of the Fontan circulation, children engaged in higher levels of physical activity in comparison to the national average. However, more than half their time was spent in sedentary behaviour. Fears and anxiety from parents and teachers may act as a barrier toward physical activity participation.

A qualitative study exploring risk perception in congenital cardiac surgery: the perspective of UK surgeons.

INTRODUCTION: Managing risk is central to clinical care, yet most research focuses on patient perception, as opposed to how risk is enacted within the clinical setting by healthcare professionals. AIM: To explore how surgical risk is perceived, encountered, and managed by congenital cardiac surgeons. METHODS: Semi-structured interviews were conducted with 20 congenital cardiac surgeons representing every unit across England and Wales. All interviews were transcribed verbatim, with analysis based on the constant comparative approach. FINDINGS: Three themes were identified, reflecting the interactions between personal, institutional, and political context in which risk is encountered and managed. First, "communicating risk" highlights the complexity and variability in methods employed by surgeons to balance legal/moral obligations with parental need and expectations. Universally, surgeons described the need for flexibility in their approach in order to meet the needs of individual patients. Second, "scrutiny and accountability" captures the spectrum of opinion arising from the binary nature of the outcomes collated and the way in which they are perceived to be interpreted. Third, "nature of the job" highlights the personal and professional implications of conveying and managing risk and the impact of recent policy changes on the way this is enacted. CONCLUSION: Variations in approaches to communicating risk demonstrate a lack of consensus, compounded by insufficient evidence to determine or monitor a "best-care" approach. With current surgical outcomes suggesting little room for increasing survival rates, future care needs should shift to the "soft skills" in order to continue to drive improvements in parental and patient experience.

Current Status of Training and Certification for Congenital Heart Surgery Around the World: Proceedings of the Meetings of the Global Council on Education for Congenital Heart Surgery of the World Society for Pediatric and Congenital Heart Surgery.

The optimal training of the highly specialized congenital heart surgeon is a long and complex process, which is a significant challenge in most parts of the world. The World Society for Pediatric and Congenital Heart Surgery (WSPCHS) has established the Global Council on Education for Congenital Heart Surgery as a nonprofit organization with the goal of assessing current training and certification and ultimately establishing standardized criteria for the training, evaluation, and certification of congenital heart surgeons around the world. The Global Council and the WSPCHS have reviewed the present status of training and certification for congenital cardiac surgery around the world. There is currently lack of consensus and standardized criteria for training in congenital heart surgery, with significant disparity between continents and countries. This represents significant obstacles to international job mobility of competent congenital heart surgeons and to the efforts to improve the quality of care for patients with Congenital Heart Disease worldwide. The purpose of this article is to summarize and document the present state of training and certification in congenital heart surgery around the world.

Congenital cardiac surgery and parental perception of risk: a qualitative study.

INTRODUCTION: The way risk is interpreted by parents of children undergoing congenital cardiac surgery is poorly documented. Literature suggests clinicians have concerns that parents may not understand the complexity of procedures. Conversely, some parents perceive an unnecessary over-emphasis of risks. AIM: To explore how risk is encountered by parents of children who are undergoing cardiac surgery, in order to deliver effective and compassionate care. METHODS: A qualitative approach was adopted. Interviews were undertaken with 18 parents (mothers n = 10; fathers n = 8). Recordings were transcribed verbatim and analysed using a constant comparative-based approach. FINDINGS: Three themes emerged from the data: the nature of risk, reflecting the complexity of parental perception of risk and the influence of the doctor-parent relationship; presenting risk, highlighting the way in which risk is presented to and interpreted by parents; and risk and responsibility, examining the way in which parents engaged with risk and the impact of this on their relationship. CONCLUSIONS: The way in which risk is perceived by parents is complex and multi-factorial. The doctor-parent relationship is key to parental engagement. However, parents manage risk and uncertainty through a number of mechanisms, including those perceived as being not rational. This can cause tension, particularly when required to engage in informed decision-making.

Use of an Extracellular Matrix Patch for Sternal Wound Dehiscence after Cardiac Surgery in a Neonate.

Management of sternal wound dehiscence in newborns after cardiac operations can be a slow and lengthy process, during which the risk of progression to deep sternal wound infection and mediastinitis remains a concern. We report the case of a neonate born with single-ventricle physiology who underwent a Damus-Kaye-Stansel procedure as first-stage palliation toward creating Fontan circulation. The postoperative period was characterized by sterile wound dehiscence of the subcutaneous layers. We used a CorMatrix extracellular matrix patch as an adjunct to repair the wound defect. After 7 weeks, the wound had healed with excellent results. To our knowledge, this is the first report of extracellular matrix patch implantation for sternal wound reconstruction in a neonate.

Gene pathway development in human epicardial adipose tissue during early life.

Studies in rodents and newborn humans demonstrate the influence of brown adipose tissue (BAT) in temperature control and energy balance and a critical role in the regulation of body weight. Here, we obtained samples of epicardial adipose tissue (EAT) from neonates, infants, and children in order to evaluate changes in their transcriptional landscape by applying a systems biology approach. Surprisingly, these analyses revealed that the transition to infancy is a critical stage for changes in the morphology of EAT and is reflected in unique gene expression patterns of a substantial proportion of thermogenic gene transcripts (~10%). Our results also indicated that the pattern of gene expression represents a distinct developmental stage, even after the rebound in abundance of thermogenic genes in later childhood. Using weighted gene coexpression network analyses, we found precise anthropometric-specific correlations with changes in gene expression and the decline of thermogenic capacity within EAT. In addition, these results indicate a sequential order of transcriptional events affecting cellular pathways, which could potentially explain the variation in the amount, or activity, of BAT in adulthood. Together, these results provide a resource to elucidate gene regulatory mechanisms underlying the progressive development of BAT during early life.

Outcome of the Norwood procedure in the setting of transposition of the great arteries and functional single left ventricle.

OBJECTIVE: To assess the surgical results of the Norwood procedure and subsequent clinical outcome in the setting of transposition of the great arteries (TGA) with a dominant morphologic left ventricle. METHODS: Among 486 patients who underwent the Norwood procedure from 1988 to 2007 at our institution, there were 37 patients with TGA and left ventricular dependant circulation with the following associated lesions: double inlet left ventricle (DILV) (n=24), tricuspid atresia (n=9), ventricular septal defect (VSD) with hypoplastic right ventricle (RV) (n=4). Outcomes for all three-staged procedure were compared with the overall Norwood group. RESULTS: Early mortality was 21.6% (8/37) compared to 26.7% (120/449) in the overall Norwood group (p=ns). There was only one subsequent death giving a 5- and 10-year actuarial survival of 72.8+/-7.4% compared to 55.3+/-2.6% and 52+/-2.9% at 5 and 10 years for the overall series (p=0.06). Median follow-up was 4.7 (0.7-10.2) years. Eighteen patients underwent stage III completion at 3.9+/-1.5 years from the second stage with no mortality. Preoperative mean pulmonary artery (PA) pressure and transpulmonary gradient were respectively 11.6+/-3.4 and 5.2+/-3.3 mmHg. All patients had good left ventricle (LV) function at time of stage III. All patients except one are currently in NYHA I. One patient (with DILV) had congenital heart block and required a pacemaker. There was no postoperative heart block. The systemic outflow was unobstructed in all patients and no patient required any additional intracardiac procedure. CONCLUSIONS: The Norwood procedure provides good palliation in this subgroup of patients and avoids the need for subsequent intracardiac operations, maintaining unobstructed systemic outflow tract and avoiding the risk of postoperative heart block.

Intraoperative Doppler velocity measurements to locate patent ITA grafts at reoperation.

We are reporting a case of a patient who underwent an aortic valve replacement with previous coronary artery bypass grafting. During the operation we used a Doppler velocity probe to locate the exact position of the bilateral internal thoracic arteries. Once the vessels were identified, a suture was passed widely around each internal thoracic artery and a snare was positioned. With the aid of the Doppler velocity probe, we achieved a gentle occlusion of the vessels, applying enough traction on the snares to abolish the flow through the internal thoracic arteries.

Myocardial protection with intermittent cold blood during aortic valve operation: antegrade versus retrograde delivery.

BACKGROUND: Intermittent antegrade cold blood cardioplegia is superior to warm blood cardioplegia in patients who have aortic valve operation. This study compared the cardioprotective efficacy of intermittent antegrade and retrograde cold blood cardioplegia with emphasis on metabolic stress in the left and right ventricles. METHODS: Thirty-nine patients who had elective aortic valve replacement were prospectively randomly selected to receive intermittent antegrade or retrograde cold blood cardioplegia. Left and right ventricular biopsies were collected 5 minutes after institution of cardiopulmonary bypass and 20 minutes after cross-clamp removal and were used to determine metabolic changes. Metabolites (adenine nucleotides, amino acids, and lactate) were measured using high-powered liquid chromatography and enzymatic techniques. Serial measurement of troponin I release was also used as a marker of myocardial injury. RESULTS: Preoperative characteristics were similar between groups. There was no in-hospital mortality, and no differences were observed in postoperative complications. Preischemic concentration of taurine was significantly higher in left ventricular biopsies, whereas adenosine triphosphate tended to be lower in the left ventricle. At reperfusion adenosine triphosphate levels were significantly lower than preischemic levels in right but not left ventricles irrespective of the route of delivery. The alanine-glutamate ratio was significantly elevated in both ventricles. Myocardial injury as assessed by troponin I release was also significantly increased in both groups. CONCLUSIONS: Retrograde and antegrade intermittent cold blood cardioplegic techniques are associated with suboptimal myocardial protection. Metabolic stress was more pronounced in the right than the left ventricle irrespective of the cardioplegic route of delivery used.

Magnesium-supplemented warm blood cardioplegia in patients undergoing coronary artery revascularization.

BACKGROUND: Although there is growing evidence to suggest that the administration of magnesium (Mg2+) to patients undergoing coronary artery bypass grafting (CABG) and to patients after myocardial infarction is beneficial, the addition of Mg2+ to cardioplegic solutions remains controversial. The aim of this study was to compare the effects of intermittent warm blood cardioplegia with and without Mg2+ supplementation on the early postoperative clinical outcomes in patients undergoing both elective or urgent CABG. METHODS: Four hundred patients undergoing CABG were prospectively randomized to receive either blood cardioplegia without Mg2+ (BC, n = 200) or supplemented with Mg2+ (BC-Mg2+, n = 200). Serial plasma Mg2+ concentrations were recorded at base line and postoperatively from days 1 to 4. RESULTS: Patient characteristics were similar and no significant differences were found in early mortality and morbidity in the two groups. Analysis of 178 patients undergoing urgent CABG for unstable symptoms (BC = 95, BC-Mg2+ = 83) demonstrated a significantly lower requirement for internal defibrillation and temporary epicardial pacing in the BC-Mg2+ group. Furthermore, there was a nearly twofold lower incidence of new postoperative atrial fibrillation in the BC-Mg2+ group compared with the BC group (19% versus 34%, p = 0.03). Postoperative plasma Mg2+ levels were consistently lower in those patients who developed new postoperative atrial fibrillation compared with those who did not (p = 0.05). CONCLUSIONS: The addition of Mg2+ to warm blood cardioplegia resulted in a lower incidence of intraoperative and postoperative arrhythmias in patients undergoing urgent CABG for unstable angina.