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IntroductionNeurodevelopmental disabilities in children with CHD can result from neurologic injury sustained in the cardiac ICU when children are at high risk of acute neurologic injury. Physicians typically order and specify frequency for serial bedside nursing clinical neurologic assessments to evaluate patients’ neurologic status.Materials and methodsWe surveyed cardiac ICU physicians to understand how these assessments are performed, and the attitudes of physicians on the utility of these assessments. The survey contained questions regarding assessment elements, assessment frequency, communication of neurologic status changes, and optimisation of assessments.ResultsSurveys were received from 50 institutions, with a response rate of 86%. Routine clinical neurologic assessments were reported to be performed in 94% of institutions and standardised in 56%. Pupillary reflex was the most commonly reported assessment. In all, 77% of institutions used a coma scale, with Glasgow Coma Scale being most common. For patients with acute brain injury, 82% of institutions reported performing assessments hourly, whereas assessment frequency was more variable for low-risk and high-risk patients without overt brain injury. In all, 84% of respondents thought their current practice for assessing and monitoring neurologic status was suboptimal. Only 41% felt that the Glasgow Coma Scale was a valuable tool for assessing neurologic function in the cardiac ICU, and 91% felt that a standardised approach to assessing pre-illness neurologic function would be valuable.ConclusionsRoutine nursing neurologic assessments are conducted in most surveyed paediatric cardiac ICUs, although assessment characteristics vary greatly between institutions. Most clinicians rated current neurologic assessment practices as suboptimal.

Limited evidence exists to guide chest tube management following cardiac surgery in children. We assessed chest tube practice variation by surveying paediatric heart centres to prepare for a multi-site quality improvement project. We summarised management strategies highlighting variability in criteria for chest tube removal between and within centres. This lack of standardisation provides an opportunity for quality improvement.

Centralisation of services such as cardiology, cardiac surgery, and intensive care in many parts of the world has resulted in the need to safely transport children with critical cardiac disease from local hospitals to specialist centres for diagnostic, surgical, and/or critical care intervention. The transport of this cohort of children, whether locally or internationally, can present specific clinical and logistical challenges. An international group of clinicians with expertise in cardiac care and critical care transport worked together to summarise current clinical practice relating to key areas of transport. This expert review covers the transport of the child with critical cardiac disease in terms of referral triage and advice, enabling optimal management of locally available resources, clinical stabilisation before transport, international air transport, transport considerations in low- and middle-income countries, and the transport of children with specific cardiac conditions. As specialist services are centralised to fewer large centres, the need for safe and timely inter-hospital transport of children with critical cardiac disease is only expected to rise in the future. The key principles outlined in this review will be helpful for practitioners in global settings who are, or might be, involved in transporting children between hospitals.

CHD is associated with poor growth, delayed motor and language skills development, and increased length of hospital stay; 28.2% of infants were stunted, with z-scores

Previous studies have identified that receiving specialist care close to home can positively influence patients’ experience. Despite this, a review of cardiology outpatient appointments at the Royal Hospital for Children in Glasgow demonstrated that a large number of families are bypassing their local children’s cardiology centre to attend cardiac clinics at the specialist children’s surgical centre. We used patient questionnaire, audit of local facilities, and examined the relationship between diagnosis and bypass numbers to better understand factors influencing this trend. Our results suggest that patient preference, short travelling distance to specialist children’s cardiac centre, a more severe cardiac diagnosis, and inconsistent local facilities, expertise, and support are likely to influence a family’s decision to bypass their local children’s cardiology centre.

Over the past 20 years, the successes of neonatal and infant surgery have resulted in dramatically changed demographics in ambulatory cardiology. These school-aged children and young adults have complex and, in some cases, previously unexpected cardiac and non-cardiac consequences of their surgical and/or transcatheter procedures. There is a growing need for additional cardiac and non-cardiac subspecialists, and coordination of care may be quite challenging. In contrast to hospital-based care, where inpatient care protocols are common, and perioperative expectations are more or less predictable for most children, ambulatory cardiologists have evolved strategies of care more or less independently, based on their education, training, experience, and individual styles, resulting in highly variable follow-up strategies. We have proposed a combination proactive–reactive collaborative model with a patient’s primary cardiologist, primary-care provider, and subspecialists, along with the patient and their family. The goal is to help standardise data collection in the ambulatory setting, reduce patient and family anxiety, increase health literacy, measure and address the non-cardiac consequences of complex cardiac disease, and aid in the transition to self-care as an adult.

The conventional history of paediatric cardiology teaches that it was Helen Taussig who founded the cardiac clinic for children at the Harriet Lane Home of the Johns Hopkins School of Medicine in 1930, when Edwards Park appointed her director of the clinic.1,2 However, the story was more complex than that, and involved the collaboration of institutions and the frustrations, doubts, and passions of both Park and Taussig. In this article, I explore the history in more depth through published works, and material preserved at the McGill University Archives, the Rockefeller Foundation Archives, and the Alan Chesney Medical Archives at Johns Hopkins.

F ETAL CARDlOLOGY IS CURRENTLY PRACTISED IN of rhythm. An early accurate diagnosis will make most European countries, blit even within possible parental choice, as well as providing the countries there is a great variation in the service opportunity to plan the delivery and postnatal provided. The recommendations provided in this management so as to optimize the outcome, document are intended to be guide for all paediatric Support can also be provided to specialists in fetal cardiologists undertaking fetal echocardiography with medicine, and to obstetricians, in the management the view of providing a service in fetal cardiology. It is of fetuses with functional disturbances, as in tWinclear that the health and legal systems vary from counto-tWin transfusion syndrome try to country, so that not all aspects of these recomb. To provide appropriate counselling and support mendations Can be implemented in all countries, The for parents and families following prenatal recommendations, nonetheless, provide a framework diagnosis l that can be adapted to fit in with local situations, c, To communicate results to the referring obstetri

Objectives:To report our experience in providing cardiac technician led paediatric echocardiography services in a district general hospital in the United Kingdom.Methods:We have collected prospectively the numbers of referrals, and the proportion of abnormal echocardiograms, since inception of the service in 2000. In additional, for a period of 12 months, we have audited in detail the patterns of referral to the service, and outcomes, assessing the effect of the service on the outreach clinic run by a visiting paediatric cardiologist.Results:Use of the system resulted in detection of a wide range of abnormalities, with our audit showing that the patients received appropriate management. The total referrals to the service increased 10 fold over the 4 year period of the study. The proportion of abnormal hearts detected by echocardiography, however, dropped from 90 per cent to 16 per cent over the same period. The numbers of patients seen in the outreach cardiology clinic remained unaltered.Conclusions:Having been proved to be an effective model for the triage of children with suspected congenital cardiac disease, adoption of a cardiac technician led echocardiographic service has seen a dramatic increase in the numbers of echocardiograms requested, without decreasing the workload of the visiting paediatric cardiologist.

PurposeWith improvements in the surgical and medical management of children with congenital heart disease, the majority are now expected to transition into adult services. Whilst the importance of successful transition is increasingly acknowledged, previous research has identified a number of areas of concern. We therefore wished to elicit the views of young people themselves concerning their requirements from a specialist cardiac service.MethodsUsing an exploratory approach our aims were to increase awareness of the service needs and expectations of young people, identify good practice and areas where communication processes and facilities could be improved, and enhance understanding of transition between paediatric and adult services. Postal questionnaires were sent to 63 young people with congenital cardiac disease aged 17 to 20 years. Open ended questions asked for views and experiences about facilities in the paediatric and adult areas, perceptions of transition between services and suggestions for improvements. Qualitative data were transferred verbatim into electronic format to facilitate coding and theming.ResultsThirty-eight (60.3 percent) completed questionnaires were received. A number of themes, including communication, care processes/caring interactions and environment, emerged regarding areas of satisfaction and dissatisfaction within the paediatric and adult services, together with areas for improvement and important aspects of transition.ConclusionsYoung people’s views need to be taken into account at all stages of the patient journey. They want an individualised approach to their care which recognises that they have specific emotional and practical needs. Such findings need to be incorporated into an ongoing model of care.

Patients with congenital cardiac disease require lifelong medical care. Current challenges that face practitioners who care for adults with congenital heart disease include identifying the best location for procedures, which could be a children’s hospital, an adult hospital, or a tertiary care facility; providing appropriate antenatal management of pregnant women with congenitally malformed hearts, and continuing this care in the peripartum period; and securing the infrastructure and expertise of the non-cardiac subspecialties, such as nephrology, hepatology, pulmonary medicine, and haematology. The objectives of this review are to outline the common problems that confront this population of patients and the medical community, to identify challenges encountered in establishing a programme for care of adults with congenitally malformed hearts, and to review the spectrum of disease and operations that have been identified in a high volume tertiary care centre for adult patients with congenital cardiac disease. Three chosen examples of the fundamental problems facing the practitioner and patient in the United States of America in 2007 are the neglected patient with congenital cardiac disease, weak infrastructure for adults with congenital cardiac disease, and family planning and management of pregnancy for patients with congenital cardiac disease.Patients with adult congenital cardiac disease often do not receive appropriate surveillance. Three fundamental reasons for this problem are, first, that most adults with congenitally malformed hearts have been lost to follow-up by specialists, and are either receiving community care or no care at all. Second, patients and their families have not been educated about their malformed hearts, what to expect, and how to protect their interests most effectively. Third, adult physicians have not been educated about the complexity of the adult with a congenitally malformed heart. This combination can be fatal for adults with complications related to their congenitally malformed heart, or its prior treatment. Two solutions would improve surveillance and care for the next generation of patients coming out of the care of paediatric cardiologists. The first would be to educate patients and their families during childhood and adolescence. They would learn the names of the diagnoses and treatments, the problems they need to anticipate and avoid, the importance of expert surveillance, career and family planning information, and appropriate self-management. The second solution would be to encourage an orderly transfer of patients from paediatric to adult practice, usually at about 18 years of age, and at the time of graduation from high school.Clinics for adults with congenital cardiac disease depend upon multidisciplinary collaboration with specialties in areas such as congenital cardiac imaging, diagnostic and interventional catheterization, congenital cardiac surgery and anaesthesia, heart failure, transplantation, electrophysiology, reproductive and high risk pregnancy services, genetics, pulmonary hypertension, hepatology, nephrology, haematology, and others. None of these services are easily available “off the rack”, although with time, experience, and determination, these services can develop very well. Facilities with experienced personnel to provide competent care for adults with congenital cardiac disease are becoming increasingly available. Parents and patients should learn that these facilities exist, and be directed to one by their paediatric caregivers when the time comes for transition to adult care.With the steady increase in the number of adults with congenital heart disease, an ever increasing number of women with such disease are becoming pregnant. Services are not widely available to assess competently and plan a pregnancy for those with more complex disease. It is essential to have a close interplay between the obstetrician, the adult congenital cardiologist, the fetal medicine perinatologist, and neonatologist.In both a community based programme and a tertiary care centre, the nuances and complexities of congenital cardiac anatomy, coupled with the high probability of previous operation during childhood, makes the trained congenital cardiothoracic surgeon best suited to deal with the surgical needs of this growing population. It is clear that the majority of adults with congenital heart disease are not “cured”, but require lifelong comprehensive care from specialists who have expertise in this complex arena. There is a growing cadre of healthcare professionals dedicated to improving the care of these patients. More information has become available about their care, and will be improved upon in the next decade. With the support of the general paediatric and paediatric cardiologic communities, and of the Adult Congenital Heart Association, and with the persistence of the providers of care for adults with congenital cardiac disease currently staffing clinics, the care of these patients should become more secure in the next decade as we mature our capabilities.