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Children’s rights to autonomy of choice are differently expressed throughout Europe. We explored differences regarding expressions of respect for children’s autonomy throughout Europe, using the procedure of human papillomavirus (HPV) vaccination offer as indicator. We used a mixed methods approach, utilizing an expert survey within the frame of “Models of Child Health Appraised” (MOCHA), among all 30 European Union (EU) and European Economic Area states. A questionnaire was designed using vignettes regarding the vaccine provision. Thirty MOCHA country agents were invited to respond from June 2017 to April 2018. In total, 28 country agents responded. We studied the following themes: (i) provision of informed consent, (ii) parental and medical paternalism, (iii) relevance of the child’s chronological age or maturity, and (iv) vaccination programs targeting boys. These are being handled differently across the region. We explored associations of these implemented practices with the national vaccine coverage rate across Europe. We used the processes of HPV vaccination to study child’s autonomy, the paradigm change toward libertarian paternalism and issues of sex-equity. Interestingly, greater respect for children’s autonomy tends to be associated with medium or high vaccination coverage rates and lower respect with lower rates. Respect and empowerment seem to have practical as well as moral benefits. Identifying and transferring the most suitable ethical approaches is crucial and should be strengthened.

Background and objectivesAdolescent sexual and reproductive health and rights (SRHR) are of particular relevance given their potential short-term or long-term health consequences. This study evaluates recommendations and policies regarding access to care in this area in 31 European countries (European Union (EU) plus Iceland, Norway and Switzerland).MethodsAs part of the EU funded Models of Child Health Appraised project, data were gathered using a 43-item questionnaire sent to experts responsible for collecting information in each country.ResultsTen countries have not developed any formal policy or recommendation that guarantee the respect of confidentiality and the possibility of consulting a physician without parents knowing. Nearly half of the countries do not have centres specialised in adolescent healthcare, tackling comprehensive health issues or focusing specifically on SRH. Access to emergency contraception and information regarding pregnancy, including testing, is easy in most countries. However, oral contraception is delivered free of charge in only 10 countries. Twenty-three countries do not meet current standards in terms of providing policy-based pregnancy care, and only 13 have set up special programmes for pregnant adolescents. In only seven countries can adolescents definitely have their pregnancy terminated without their parents knowing (and in another seven countries in selected situations).ConclusionThe provision and availability of adolescent-friendly SRHR care are far from optimal in around half of the surveyed countries. These results call for the review and implementation of policies, specialised healthcare centres and training initiatives for primary care providers.

Graphical abstract, Highlights • PVL after TMVR with a Tendyne device can result in severe intravascular hemolysis. • SAM of the mitral valve can cause anterior PVL following Tendyne TMVR. • TAVR can relieve LVOT obstruction caused by SAM after Tendyne TMVR. • Pre-, peri-, and postprocedural imaging is key in decision making.

Summary Background Cardiac catheterization is the gold-standard modality for investigation of cardiovascular morphology before bidirectional cavopulmonary connection, but requires general anaesthesia and is associated with procedural risk. Aims To assess the diagnostic accuracy and safety of computed tomography in diagnosing great vessel stenosis/hypoplasia compared with cardiac catheterization and surgical findings. Methods Twenty-seven patients (10 after Norwood stage I) underwent computed tomography before surgery between January 2010 and June 2016; 16 of these patients also underwent cardiac catheterization. Proximal and distal pulmonary artery, aortic isthmus and descending aorta measurements, radiation dose and complications were compared via Bland-Altman analyses and correlation coefficients. Results The accuracy of computed tomography in detecting stenosis/hypoplasia of either pulmonary artery was 96.1% compared with surgical findings. For absolute vessel measurements and Z-scores, there was high correlation between computed tomography and angiography at catheterization (r = 0.98 for both) and a low mean bias (0.71 mm and 0.48; respectively). The magnitude of intertechnique differences observed for individual patients was low (95% of the values ranged between −0.9 and 2.3 mm and between −0.7 and 1.7, respectively). Four patients (25%) experienced minor complications from cardiac catheterization, whereas there were no complications from computed tomography. Patients tended to receive a higher radiation dose with cardiac catheterization than with computed tomography, even after exclusion of interventional catheterization procedures (median 2.5 mSv [interquartile range 1.3 to 3.4 mSv] versus median 1.3 mSv [interquartile range 0.9 to 2.6 mSv], respectively; P = 0.13). All computed tomography scans were performed without sedation. Conclusions Computed tomography may replace cardiac catheterization in identification of great vessel stenosis/hypoplasia before bidirectional cavopulmonary connection when no intervention before surgery is required. Computed tomography carries lower morbidity, can be performed without sedation and may be associated with less radiation.

Endografting for atretic coarctation is technically feasible to avoid the risks of open surgery. It requires a strategic and structured endovascular approach such as the “Railway” technique for safe and successful restructuring of complete aortic atresia and avoiding rupture or bleeding.

Ebstein’s anomaly (EA) is a rare malformation of the tricuspid valve (TV), characterized by apical displacement of the annular attachments of the septal and inferior (mural) leaflets into the right ventricular (RV) cavity, with varying degrees of adherence to the underlying myocardium. The natural history is quite variable and depends on the severity and presence of associated arrhythmias, which plays a significant role with regard to the prognosis. Prenatal diagnosis is associated with higher perinatal mortality, as these usually represent the severe end of the disease spectrum. Different surgical strategies have been employed, although the cone operation, introduced in the past decade, has significantly changed the surgical approach and improved the outcomes of these patients. This chapter presents the case of a newborn with an antenatal diagnosis of EA who presented with severe cyanosis and major arrhythmias at birth requiring intensive care management for the first month of life. After some years of being relatively asymptomatic, he re-presented with recurrent arrhythmias and decreased exercise tolerance, requiring multiple interventions. His clinical course and management are presented, together with a detailed review of this disease from the anatomical aspects to its diagnosis and medico-surgical management.

Background Rupture of Sinus of Valsalva (rSOV) is a rare and potentially life-threatening condition often misdiagnosed. Percutaneous device closure has been replacing surgical repair as a treatment of choice. However, long-term outcome is poorly documented. Methods Echo database (2001-2019) was searched for patients >16y with rSOV. Clinical data were collected from ACHD database. Marfan Syndrome patients were excluded. Results Fifteen patients (42.2y, 10M) were diagnosed with rSOVbetween 1979 and 2019. HF symptoms at initial presentation were reported in 50%. All cases were diagnosed by TTE with finding of high velocity continuous flow from SOV to right heart. Two were initially misdiagnosed as VSD. Digital imaging recordings of 10/15 were available. The aortic root was dilated in 8/10. Four had asymmetrical SOV dilatation. LV and LA were dilated in 7/10 and 9/10. Significant aortic regurgitation was in 4. Two had RVOTO. RVSP was always raised. Echo findings are summarised in the Table. Mean FU after repair was 10,7y (0,9-39). Ten patients had surgical repair and 5 device closure. Seven had repair of concomitant lesions (4 VSD closure and 3 AVR) at the time of the procedure. One redo device closure was performed. During FU 1 died from Cardiomyopathy. At the latest FU significant improvement in functional class, LV and LA size and RVSP was found. Conclusion Patients with rSOV may present with acute HF. High velocity continuous flow from SOV to right heart on TTE is characteristic feature for diagnosis. Percutaneous closure is an attractive alternative to surgery in patients with isolated lesion. Significant haemodynamic improvement can be achieved with good long-term haemodynamic results Tot = 15 Initial findings Latest FU NYHA class 4 class I 2 class II 2 class III 4 class IV 3 unknown 11 class I 2 class II 1 class III 0 class IV* SOV (mm) 38.2 (33-44) STJ (mm) 36.2 (26-42 Asc Ao (mm) 30.3 (25-34) rupture site 8 RC sinus, 2 NC sinus Shunt to 8 RVOT, 1 RA, 1 RVOT + RA LVEDV (ml) 169.7 (114-330) 120 (67-230)* LVESV (ml) 66(42-130) 46 (28-80)* LAVi (ml/m2) 53.1 (30-129) 35 (24-53)* LV EF% 61.2 (57-65) 60.4 (50-70) RVSP (mmHg) 53.2 (37-130) 24.06 (15-32)** Pre VS post procedure p-value: * P Abstract P1598 Figure. PLAX in patient with ruptured RC sinus

Measures of left ventricular (LV) systolic and diastolic function are known predictors of mortality after repair of tetralogy of Fallot. We aimed to characterise LV reverse remodelling achievable with ramipril therapy.A blinded post-hoc analysis of baseline and 6-month follow-up echocardiograms from the APPROPRIATE (ISRCTN: 97515585) randomised double-blinded placebo-controlled trial of ramipril therapy was performed in 64 patients: 32 in ramipril and 32 in placebo group. Tissue Doppler systolic and diastolic myocardial velocities, mitral inflow velocities and time intervals were measured. Left atrial area and left atrial emptying fraction were calculated. There was significant increase in long axis shortening mean (standard deviation); MAPSE [1.9 (4.2) mm vs -0.2 (3.7) mm; p = 0.030], peak lateral systolic velocity; S' lateral [1.0 (2.0) cm/s vs -0.3 (2.2) cm/s; p = 0.025], peak lateral early diastolic velocity; E' lateral [0.57 (2.4) cm/s vs -3.3 (3.9) cm/s; p 0.001], transmitral to lateral mitral annular early diastolic velocity ratio; E/E' lateral [-0.7 (1.9) vs 1.5 (1.9); p 0.001] over the study period in the ramipril compared to the placebo group. Significantly higher measurements were observed in the ramipril arm of the subgroup of patients with right ventricular restrictive physiology in terms of peak late diastolic velocity; A [5.9 (13.5) cm/s vs -5.8 (12.5) cm/s; p = 0.041] and early to late diastolic transmitral velocity ratio; E/A [-0.18 (0.42) vs 0.23 (0.48); p = 0.037].Six months' ramipril treatment appears to limit progression of both diastolic and systolic LV function in adults late after tetralogy of Fallot repair. With increased appreciation that even subtle LV disease predicts tetralogy of Fallot outcomes, further clinical trials of drug therapies are justified.

This Viewpoint presents and discusses the development of the first core principles and standards for effective, personalised care of children living with complex care needs in Europe. These principles and standards emerged from an analysis of data gathered on several areas, including the integration of care for the child at the acute-community interface, the referral-discharge interface, the social care interface, nursing preparedness for practice, and experiences of the child and family. The three main principles, underpinned by a child-centric approach, are access to care, co-creation of care, and effective integrated governance. Collectively, the principles and standards offer a means to benchmark existing services for children living with complex care needs, to influence policy in relation to service delivery for these children, and to provide a suite of indicators with which to assess future service developments in this area.

Background Scimitar syndrome is a rare combination of cardiopulmonary abnormalities found in 1–3 per 1000 live births. Anomalous origin of the left coronary artery from the pulmonary artery (ALCAPA) is only found in 1 in 250–400 congenital heart disease patients. Objective We aimed to investigate the incidence of left circumflex ALCAPA within our referral center’s cohort of scimitar syndrome patients. Materials and methods A review of medical records, cardiac imaging and operative notes from all patients diagnosed with scimitar syndrome at our center between 1992 and 2016 was undertaken and all imaging reviewed. Results Fifty-four patients with scimitar syndrome and imaging were identified. Of these, 3 patients (1 male and 2 female) with ALCAPA were identified, representing an incidence of 5.5% (95% confidence interval [CI] 0–11.67%). In all three cases, the anomalous coronary arising from the pulmonary artery was the left circumflex coronary artery (LCx) and the point of origin was close to the pulmonary arterial bifurcation. Conclusion We hypothesize that the prevalence of LCx-ALCAPA, in the setting of scimitar syndrome, may be greater than previously thought. We suggest that any patient with scimitar syndrome, especially with evidence of ischaemia, should be investigated for ALCAPA. Given its noninvasive nature and simultaneous imaging of the lungs, we suggest that cardiovascular CT is the most appropriate first-line investigation for these patients.

ObjectivesInfants with symptomatic partial and transitional atrioventricular septal defect undergoing early surgical repair are thought to be at greater risk. However, the outcome and risk profile of this cohort of patients are poorly defined. The aim of this study was to investigate the outcome of symptomatic infants undergoing early repair and to identify risk factors which may predict mortality and reoperation.MethodsThis multicentre study recruited 51 patients (24 female) in three tertiary centres between 2000 and 2015. The inclusion criteria were as follows: (1) partial and transitional atrioventricular septal defect, (2) heart failure unresponsive to treatment, (3) biventricular repair during the first year of life.ResultsMedian age at definitive surgery was 179 (range 0–357) days. Sixteen patients (31%) had unfavourable anatomy of the left atrioventricular valve: dysplastic (n=7), double orifice (n=3), severely deficient valve leaflets (n=1), hypoplastic left atrioventricular orifice and/or mural leaflet (n=3), short/poorly defined chords (n=2). There were three inhospital deaths (5.9%) after primary repair. Eleven patients (22%) were reoperated at a median interval of 40 days (4 days to 5.1 years) for severe left atrioventricular valve regurgitation and/or stenosis. One patient required mechanical replacement of the left atrioventricular valve. After median follow-up of 3.8 years (0.1–11.4 years), all patients were in New York Heart Association (NYHA) class I. In multivariable analysis, unfavourable anatomy of the left atrioventricular valve was the only risk factor associated with left atrioventricular valve reoperation.ConclusionsAlthough surgical repair is successful in the majority of the cases, patients with partial and transitional atrioventricular septal defect undergoing surgical repair during infancy experience significant morbidity and mortality. The reoperation rate is high with unfavourable left atrioventricular valve anatomy.

Early recognition, identification and treatment of children with attention deficit hyperactivity disorder (ADHD) can reduce detrimental outcomes and redirect their developmental trajectory. We aimed to describe variations in age of ADHD diagnosis and stimulant prescribing among general practitioner practices in a nationwide network and identify child, parental, household and general practice factors that might account for these variations. Cross-sectional study of children aged under 19 years registered within a general practice in the Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) network in 2016, RCGP RSC has a household key allowing parent and child details to be linked. Data from 158 general practices and 353 774 children under 19 were included. The mean age of first ADHD diagnosis was 10.5 years (95% CI 10.1 to 10.9, median 10, IQR 9.0–11.9) and the mean percentage of children with ADHD prescribed stimulant medications among RCGP RSC practices was 41.2% (95% CI 38.7 to 43.6). There was wide inter-practice variation in the prevalence of diagnosis of ADHD, the age of diagnosis and stimulant prescribing. ADHD diagnosis is more likely to be made later in households with a greater number of children and with a larger age difference between adults and children. Stimulant prescribing for children with ADHD was higher in less deprived practices. Older parents and families with more children fail to recognise ADHD and may need more support. Practices in areas of higher socio-economic status are associated with greater prescribing of stimulants for children with ADHD.

ObjectiveTo describe the intervention spectrum, complexity, and safety outcomes of catheter-based interventions in a contemporary adult congenital heart disease (ACHD) tertiary cohort.MethodsAll patients over 16 years who underwent a catheter-based intervention for ACHD in our centre between 2000 and 2016 were included. Baseline demographics, clinical characteristics, indications for and complexity of intervention, procedural complications and early and mid-term mortality were analysed.ResultsOverall, 1644 catheter-based interventions were performed. Intervention complexity ranged from simple (67.5%) to intermediate (26.4%) and to high (6.1%). Commonly performed procedures were atrial septal defect (33.4%) and patent foramen ovale closure (26.1%) followed by coarctation of the aorta (11.1%) and pulmonary artery interventions (7.0%). Age at index intervention was 40±16 years, 758 (46.1%) patients were male, 73.2% in New York Heart Association (NYHA) class I, 20.2% in NYHA class II, whereas 6.6% in NYHA class III/IV. In-hospital mortality was 0.7%. Median postinterventional length of stay was 1 day. Complications occurred in 129 (7.9%) with major adverse events in 21 (1.3%). One-year postintervention survival rates were 98.7% (95% CI 98.2 to 99.2). Over the study period, there was a notable shift in intervention complexity, with a predominance of simple procedures performed in early years and more complex procedures in later years. Furthermore, the case mix during the study broadened (pConclusionThis study shows an increasing complexity and expanding variability of ACHD catheter-based interventions, associated with low major complications, short hospital stays and low early and mid-term mortality. Ongoing investment in ACHD catheter interventions is warranted.

Background The main objective of this study was to explore the contextual determinants of child health policies. Methods The Horizon 2020 Models of Child Health Appraised (MOCHA) project has one Country Agent (CA) in all 30 EU and EEA countries. A questionnaire designed by MOCHA researchers as a semi-structured survey instrument asked CAs to identify and report the predominating public and professional discussions related to child health services within the last 5 years in their country and the various factors which may have influenced these. The survey was issued to CAs following validation by an independent Expert Advisory Board. The data were collected between July and December 2016. The data was qualitatively analysed using software Nvivo11 for data coding and categorization and constructing the scheme for identified processes or elements. Results Contextual determinants of children’s health care and policy were grouped into four categories. 1) Socio-cultural determinants: societal activation, awareness, communication, trust, freedom, contextual change, lifestyle, tolerance and religion, and history. 2) Structural determinants which were divided into: a) external determinants related to elements indirectly correlated with health care and b) internal determinants comprising interdependent health care and policy processes. 3) International determinants such as cross-nationality of child health policy issues. 4) The specific situational determinants: events which contributed to intensification of debates which were reflected by behavioural, procedural, institutional and global factors. Conclusions The influence of context across European countries, in the process of children’s health policy development is clearly evident from our research. A number of key categories of determinants which influence child health policy have been identified and can be used to describe this context. Child health policy is often initiated in reaction to public discontentment. The multiple voices of society resulted, amongst others, in the introduction of new procedures, action plans and guidelines; raising levels of awareness, intensifying public scrutiny, increasing access and availability of services and provoking introduction of structural changes or withdrawing unfavourable changes.

Introduction/Background Children are a fifth of Europe’s population; they are citizens, future workers, future parents and carers, and the future elderly population. However they are dependent on society meeting their specific needs for effective primary care, which provides some 90% of all health contact, yet there is little research into how well current services do this. Methods The MOCHA project was funded by the EU as a Horizon 2020 project to appraise models of child primary health care in all 30 EU/EEA countries. The 20 multidisciplinary scientific partners used local agents, networks, and literature to assess structural, cultural, sociological and political dimensions. An External Advisory Board assisted the project; partners from Australia, Switzerland and the USA gave global context. The appraisal was based on a holistic multi stakeholder framework correlating structure, process and outcome measures. 81 children from 5 countries were interviewed. A number of tracer conditions spanning primary care prevention (immunisation and screening), chronic (asthma) and complex care (long term ventilation, ADHD and intractable epilepsy) were selected to help illustrate the systems in place. Results Direct attribution of positive outcome measures of morbidity and mortality to primary care separate from wider health system factors (finance, workforce capacity/competence) proved impossible due to lack of comparable data. A number of optimum design principles emerged. MOCHA reached six Conclusions: Primary care for children in each country comprises many components; their cohesion as a system is determined more by their accessibility, capacity, and relationship than by their style (such as general or paediatrician primary care practitioner). Effectiveness is primarily determined by access, workforce, service coordination and continuity, inter-sectoral governance, sociocultural linkage, and financing. Optimal primary care for children is child-centric, equitable, proactive, integrated with specialist, social care and education services, and based on (and yielding) robust evidence. Interdependence of health, economy and society is more influential than system construct, but there is inadequate public health, primary care and inter-sectoral collaboration on child health and development concerns. Children are unacceptably invisible in health data and policy in Europe, including rights definition, data sets, research activity, e-health, and policy innovation. Focussed cross-Directorate and inter-agency activity within Europe would strengthen evidence and policy to facilitate stronger national systems.

Good records are vital to joined-up healthcare, ensuring delivery of preventive health, and monitoring public health. In all health spheres, digitisation and e-health are the appropriate new technologies. However, hitherto children have been badly served, and the literature shows minimal recent research in Europe. All European countries are encouraged to lodge with WHO their current e-health plan. In 2016 the Models of Child Health Appraised (MOCHA) project examined these for 30 countries, and found only 11 (36.6%) had specific mention of children and adolescents’ issues. However, some countries had innovations in hand, including a cloud-based immunisation system in Hungary, and a parent and child portal in Latvia. Record linkage is vital, yet only 25 (83.3%) of countries have a unique health record identifier, with only 9 (30%) issuing from birth. All countries but four have general use of electronic health records in child primary care. Only Croatia has a child-specific primary care EHR; most others are all age systems. Fourteen countries have a separate child public health record system; in half of these are appointments issued. Countries vary in data exchange policies between primary and secondary care; with community and preventive health providers, and with the school health service. There is also variation between countries on children’s record access, and on confidentiality from parents. Standards bodies are involved in a European Patient Summary, which only marginally impacts on children’s needs. ECDC promotes all-age Immunisation Information Systems. WHO promotes Home Based Records, but there are no standards, or established best practice. Web sites and mobile phone apps are modern health support tools, but they can be unreliable and can breach privacy. Only six countries have accreditation processes for apps, and eight have them for web sites. A few countries have instigated specific web sites for health advice for children. E-health is an ideal way to facilitate child health clinicians and give children relevant easy access to services. Several good initiatives exist, and ECDC and standards bodies are contributing, but overall the situation is poor. But with evaluation and collaboration involving professional and standards bodies, WHO and the EU, existing best practice could be drawn on to identify an optimal model on which all countries could draw.This would include: Record linkage from birth Standards for data items and functionality including condition-specific algorithms. Access, sharing, and consent protocols Approved anonymised use for research Web site and app approval criteria.

The Models of Child Health Appraised (MOCHA) project identified the different models of primary care that exist for children, examined the particular attributes that might be different from those directed at adults and considered how these models might be appraised. The project took the multiple and interrelated dimensions of primary care and simplified them into a conceptual framework for appraisal. A general description of the models in existence in all 30 countries of the EU and EEA countries, focusing on lead practitioner, financial and regulatory and service provision classifications, was created. We then used the WHO ‘building blocks’ for high-performing health systems as a starting point for identifying a good system for children. The building blocks encompass safe and good quality services from an educated and empowered workforce, providing good data systems, access to all necessary medical products, prevention and treatments, and a service that is adequately financed and well led. An extensive search of the literature failed to identify a suitable appraisal framework for MOCHA, because none of the frameworks focused on child primary care in its own right. This led the research team to devise an alternative conceptualisation, at the heart of which is the core theme of child centricity and ecology, and the need to focus on delivery to the child through the life course. The MOCHA model also focuses on the primary care team and the societal and environmental context of the primary care system.

Primary care (PC) is a strong determinant of overall health care. Children make up around a fifth of the population of the European Union and European Economic Area and have their own needs and uptake of PC. However, there is little research into how well PC services address their needs. There are large differences in childhood mortality and morbidity patterns in the EU and EEA countries, and there has been a major epidemiological shift in the past half century from predominantly communicable disease, to non-communicable diseases presenting and increasingly managed in PC. This increase in multifactorial morbidities, such as obesity and learning disability, has led to the need for PC systems to adapt to accommodate these changes. Europe presents a challenging picture of unexplained variation in health care delivery and style and of children’s different health experiences and health-related behaviour. The Models of Child Health Appraised (MOCHA) project aimed to describe the PC systems in detail, analyse their components and appraise them from a number of different viewpoints, including professional, public, political and economic lenses. It did this through nine work packages supported by a core management team, and a network of national agents, individuals in each MOCHA country who had the expertise in research and knowledge of their national health care system to answer a wide range of questions posed by the MOCHA scientific teams.

Models of Child Health Appraised (MOCHA) was a wide-ranging, multi-disciplinary and multi-method study that aimed to identify the best models of provision of primary care for the children of the European Union. The research has identified two main conclusions: (1) The depth of interdependency of health, economy and society. Primary care needs to be an active partner in public debate about current child health concerns. It should orientate more effectively in addressing wider societal influences on child health through advocacy and collaborative intersectoral public health approaches with those agencies responsible for public and community health if it is to address effectively issues such as childhood obesity, mental health and vaccine hesitancy. As part of this, it needs to address its workforce composition and skills, not least in two-way communication. (2) The European Community has many visions and commitments to children and child health policies, but their effectiveness is largely unfulfilled. The Commission can strengthen its impact on children’s health and healthcare services within current remits and resources by focusing on a number of key fields: planned and structured research, providing insight into optimal human resources and skills in child primary care, developing and using ethical means of listening to children’s views, remedying the invisibility of children in data, measuring the quality of primary care from a child-centric perspective, understanding the economics of investing in children’s health, developing e-health standards and evaluation, collaborative and harmonised use of downloaded research databases, understanding and respecting children’s rights and equity, and appreciating and allowing for children’s evolving autonomy as they grow up. An optimal model of primary care for children is proactive, inclusive, corporately linked, based on and providing robust evidence, and respects the wider determinants of health and children’s involvement in their health trajectory.

Information and communication technologies can transform how services can be and are delivered as has already happened in other arenas, such as civil aviation, financial services and retailing. Most modern health care is heavily dependent on e-health, including record keeping, targeted information sharing and digital diagnostic and imaging techniques. However, there remains little scientific knowledge base for optimal system content and function in primary health care, particularly for children. Models of Child Health Appraised (MOCHA) aimed to establish the current e-health situation in children’s primary care services. Electronic health records (EHRs) are in regular use in much of northern and western Europe and in some newer European Union Member States, but other countries lag behind. MOCHA investigated the use of unique identifiers, the use of case-based public health EHRs and the capability of record linkage, linkage of information with school health data and monitoring of social media influences, such as health websites and health apps. A widespread lack of standards underlined a lack of research enquiry into this issue in terms of children’s health data and health knowledge. Health websites and apps are a growing area of healthcare delivery, but there is a worrying lack of safeguards in place. The challenge for policy-makers and practitioners is to be aware and to lead on the innovative harnessing of new technologies, while protecting child users against new harms.

Whilst nations have overall responsibility for policies to protect and serve their populations, in many countries, health policy and policies for children are delegated to regions or other local administrations, which make it a challenging subject to explore at a national level. We sought to establish which countries had specific strategies for child and adolescent health care, and whether primary care, social care and the school–healthcare interface was described and planned for, within any policies that exist. In addition, we established the extent to which a child health strategy and meaningful reference to children’s records and care delivery exist in an e-health context. Of concern in the Models of Child Health Appraised (MOCHA) context is that 40% of European Union and European Economic Area countries had reported no health strategy for children, and more than a half had no reference to supporting delivery of children’s health in their e-health strategy.

There is more to primary care than solely medical and nursing services. Models of Child Health Appraised (MOCHA) explored the role of the professions of pharmacy, dental health and social care as examples of affiliate contributors to primary care in providing health advice and treatment to children and young people. Pharmacies are much used, but their value as a resource for children seems to be insufficiently recognised in most European Union (EU) and European Economic Area (EEA) countries. Advice from a pharmacist is invaluable, particularly because many medicines for children are only available off-label, or not available in the correct dose, access to a pharmacist for simple queries around certain health issues is often easier and quicker than access to a primary care physician or nursing service. Preventive dentistry is available throughout the EU and EEA, but there are few targeted incentives to ensure all children receive the service, and accessibility to dental treatment is variable, particularly for disabled children or those with specific health needs. Social care services are an essential part of health care for many extremely vulnerable children, for example those with complex care needs. Mapping social care services and the interaction with health services is challenging due to their fragmented provision and the variability of access across the EU and EEA. A lack of coherent structure of the health and social care interface requires parents or other family members to navigate complex systems with little assistance. The needs of pharmacy, dentistry and social care are varied and interwoven with needs from each other and from the healthcare system. Yet, because this inter-connectivity is not sufficiently recognised in the EU and EEA countries, there is a need for improvement of coordination and with the need for these services to focus more fully on children and young people.

To adopt and implement innovative good practices across the European Union requires developing policies for different political and constitutional contexts. Health policies are mostly decided by national political processes at different levels. To attain effective advice for policy making and good practice exchange, one has to take different models of governance for health into account. We aimed to explore which concepts of governance research are relevant for implementing child health policies in a European Union context. We argue that taking into account the insights of good intersectoral and multilevel governance in research and practice is essential and promising for future analyses. These governance concepts help to understand what actors and institutions are potentially of relevance for developing and implementing child-centric health care approaches not only within health care but also outside health care. The framework we developed has the potential to advise on and thus support effectively the spreading and implementation of good practices of child-centric health policy approaches across the European Union. With this heuristic framework, the variety of relevant stakeholders and institutions can better be mapped and taken into account in implementation processes. Also, the normative side—particularly stressing values that make governance “good governance”—is to be taken into account.

ObjectivesRespiratory infections are associated with acute exacerbations of asthma and accompanying morbidity and mortality. In this study we explore inter-practice variations in respiratory infections in children with asthma and study the effect of practice-level factors on these variations.DesignCross-sectional study.SettingWe analysed data from 164 general practices in the Royal College of General PractitionersResearch and Surveillance Centresentinel network in England.ParticipantsChildren 5–12 years.InterventionsNone. In this observational study, we used regression analysis to explore the impact of practice-level determinants on the number of respiratory infections in children with asthma.Primary and secondary outcome measuresWe describe the distribution of childhood asthma and the determinants of upper/lower respiratory tract infections in these children.Results83.5% (137/164) practices were in urban locations; the mean number of general practitioners per practice was 7; and the mean duration since qualification 19.7 years. We found almost 10-fold difference in the rate of asthma (1.5–11.8 per 100 children) and 50-fold variation in respiratory infection rates between practices. Larger practices with larger lists of asthmatic children had greater rates of respiratory infections among these children.ConclusionWe showed that structural/environmental variables are consistent predictors of a range of respiratory infections among children with asthma. However, contradictory results between measures of practice clinical care show that a purely structural explanation for variability in respiratory infections is limited. Further research is needed to understand how the practice factors influence individual risk behaviours relevant to respiratory infections.

Major congenital or acquired heart disease in neonates presents with cyanosis, hypoxia, acute circulatory failure or cardiogenic shock. Antenatal diagnosis is made in up to 50% but heart disease is unanticipated in the remainder. The presence of significant heart disease in premature infants is also frequently not suspected at first; in general, whatever the underling cardiac anomaly, the clinical condition is worse, deteriorates more quickly and carries a poorer prognosis in premature and low birth weight infants. Although congenital cardiac malformations are the most likely, other important cardiac disorders are encountered. In general initial treatment options, often without a precise diagnosis, include diuretics, prostin, catecholamines, phosphodiesterase inhibitors, ventilation and occasionally ECMO but the key to successful treatment remains the correct diagnosis. Many conditions will only show significant improvement with treatment by the interventional cardiologist or cardiac surgeon.

Phosphodiesterase 3 inhibitors have been used successfully in pediatric patients with acute or chronic myocardial dysfunction over the last two decades. Their protracted continuous intravenous administration is associated with risk of infectious and thromboembolic complications. Weaning intravenous medication and starting oral angiotensin-converting enzyme (ACE) inhibitors and/or beta-blockers can be challenging. We reviewed retrospectively hospital records of 48 patients receiving oral enoximone treatment in a single tertiary pediatric cardiac center between November 2005 and April 2014. Failure to wean from intravenous milrinone infusion and/or intolerance of ACE inhibitors and/or beta-blockers was indications for oral enoximone treatment. Age of the patients ranged between 0.5 and 191 months (median 7.5 months) at the time of starting enoximone treatment. There were 14 patients (29 %) with left ventricular dysfunction due to myocarditis or dilated cardiomyopathy and 34 patients (71 %) with myocardial dysfunction complicating congenital heart disease. Fifteen (44 %) of these 34 patients had left ventricular dysfunction, 13 (38 %) right ventricular dysfunction, and in 6 (18 %) both ventricles were failing. Duration of oral enoximone treatment was between 3 days and 34 months (median of 2.3 months). Myocardial functional recovery allowed for weaning of enoximone treatment in 15 patients (31 %) after 6 days-15 months (median 5 months). No adverse hemodynamic effects were noted. Blood stained gastric aspirates encountered in two patients resolved with concomitant milk administration. Based on our limited experience, oral enoximone is a well-tolerated and promising alternative to intravenous medication and/or other commonly used oral medications in selected pediatric patients with chronic heart failure.

Purpose Transcatheter closure of patent ductus arteriosus (PDA) has become the preferred approach in clinical practice. The ADOII was developed for closure of small to moderate PDAs. Multiple studies have confirmed good early and long-term results but no studies comparing coil and the ADOII device have been reported. Methods Retrospectively, we compared the residual shunt rate and complication rate between the ADOII device and the coil in all patients aged 0–18 years who underwent transcatheter closure of PDA between September 2014 and October 2016 at the Royal Brompton Hospital. Results Immediate residual shunt (RS) rate was 13.9% (5/36 cases) for the Flipper coil and 13.3% (4/30 cases) for the ADOII device (p=0.948). Echocardiographic assessment within 24 hours demonstrated a reduction in shunt rate in the ADOII group to 10% (3/30 cases) compared to the coil cohort, still maintaining a shunt rate of 13.8% (5/36 cases) (p=0.63). At follow up, the RS rate was 4.2% (1/24) in the ADOII group compared to 0% for the coil group (p=0.444). Complications were higher with Flipper coils (4 cases/11.1%) compared to the ADOII device (2 cases/6.7%) (p=0.532). An additional device was required in 3 cases (8.3%) of PDAs corrected with Flipper coil, compared to only 1 case (3.3%) in the ADOII cohort (p=0.397). Conclusion Transcatheter occlusion of small to moderate PDAs is safe and effective with both ADOII devices and coils. The ADOII device seems to be associated with fewer complications and reduced residual shunt rates initially but larger studies are required to better compare the two systems.

With improvements in neonatal and paediatric care, more children living with complex care needs are surviving beyond infancy into late childhood and adulthood than in the past. We examined the current approach to the management and integration of care of children living with complex care needs in 30 European countries, as well as the implications for primary care service delivery. This descriptive study, with an embedded qualitative aspect, consisted of questions adapted from the Standards for Systems of Care for Children and Youth with Special Health Care Needs, and included questions on a complex care European survey of change, adapted from the Eurobarometer survey. The analysis indicates that few systems are in place in countries across Europe to identify all the health-care providers who deliver care to a child living with complex care needs, and that less than half of all countries surveyed have policies in place to support care coordination for these children. Primary care physicians have little involvement in care planning for children before their discharge to the community setting, and there is little parental participation in policy development. Access to, and governance of, care for these children varies widely. Particular issues identified pertain to parents as catalysts of optimum integration of care, pathways to specialist care, and the need for comprehensive national integrated care programmes.

Football is one of the most popular sports worldwide. Much of the research literature is primarily focused on contributions from the academic community. Given this, the Editors were motivated to provide an opportunity for practitioners and commissioners from applied settings to share their perspectives. This applied article offers insights from ‘key players' activity involved in football-led health improvement interventions.

IntroductionThe scimitar syndrome comprises hypoplastic right pulmonary artery and lung, anomalous right pulmonary venous drainage to the inferior caval vein, aortopulmonary collateral(s) to the right lung, and bronchial anomalies.AimThe aim of this study was to describe the morphological and clinical spectrum of variants from the classical scimitar syndrome in a single institution over 22 years.ResultsIn total, 10 patients were recognised. The most consistent feature was an aortopulmonary collateral to the affected lung (90%), but there was considerable variation in the site and course of pulmonary venous drainage. This was normal in 3 (one with meandering course), anomalous right to superior caval vein in 1, to the superior caval vein and inferior caval vein in 2, and to the superior caval vein and the left atrium in 1; one patient had a right pulmonary (scimitar) vein occluded at the insertion into the inferior caval vein but connected to the right upper pulmonary vein via a fistula. There were two left-sided variants, one with anomalous left drainage to the coronary sinus and a second to the innominate vein.Among all, three patients had an antenatal diagnosis and seven presented between 11 and 312 months of age; 90% of the patients were symptomatic at first assessment.All the patients underwent cardiac catheterisation; collateral embolisation was performed in 50% of the patients. Surgical repair of the anomalous vein was carried out in two patients, one patient had a right pneumonectomy, and one patient was lost to follow-up. There was no mortality reported in the remainder of patients during the study period.ConclusionThe heterogeneity of this small series confirms the consistent occurrence of an anomalous arterial supply to the affected lung but considerable variation in pulmonary venous drainage.

It is not uncommon to see babies in clinic who have been referred because they are persistently tachypnoeic. Sometimes this has been noticed by the parents, but more often, especially if it is the parents’ first baby, they do not realise anything is amiss, and it is the midwife, health visitor or general practitioner who brings it to their attention. Occasionally it has been noted as early as the postnatal ward. This article outlines a management approach to a term baby with tachypnoea in an outpatient setting, and is not focusing on acutely unwell infants (figure 1). It is taken from the perspective of a referral to a general paediatric clinic, although these babies are also often referred straight to a respiratory clinic. Figure 1 Algorithm for management of a baby with tachypnoea. CXR, chest radiograph; SpO2, oxygen saturation. Aside from the huge physiological changes that occur at birth, in the postnatal period there are substantial changes in the resting breathing pattern of babies, notably a slowing of the rate and a lengthening of inspiration. Paradoxical chest wall movements and short apnoeic pauses (>2 s) during sleep decrease over several months. Infants may also exhibit periodic breathing, which is a pattern of short respiratory pauses (

Objectives This study aimed to report our national experience with transcatheter patent ductus arteriosus (PDA) occlusion in infants weighing

Bicuspid aortic valve is a common congenital defect associated with several other pathological processes. We describe a complex case in a 13-year-old boy where there was significant aortic valve insufficiency and a severely dilated ascending aorta. In addition, there was complex coarctation of the aorta in which both subclavian arteries arose from the coarctation site. A hybrid bilateral carotid-subclavian bypass grafting with coarctation stenting procedure was performed followed by a modified Bentall procedure. This case illustrates a successful two-stage, hybrid technique in a late-diagnosed paediatric patient.

Introduction: The aim of this paper is to report on the development of surveys to explore integration of care for children living with complex care needs across the European Union (EU) and European Economic Area (EEA). Theory and methods: Each survey consists of a vignette and questions adapted from the Standards for Systems of Care for Children and Youth with Special Health Care Needs and the Eurobarometer Survey . A Country Agent in each country, a local expert in child health services, will obtain data from indigenous sources. Results: We identified ‘in-principle’ complex problems and adapted surveys to capture care integration. We expect to get rich data to understand perceptions and to inform actions for a number of complex health issues. Conclusion: The study has the potential to make a wide contribution to individual countries of the EU/EEA to understand their own integration of services mapped against responses from other member states. Early results are expected in Spring 2017.

The Scimitar syndrome is a complex association of cardiovascular and bronchopulmonary abnormalities, with the main feature a partial or total anomalous right pulmonary venous drainage to the inferior vena cava. A number of cases that lack of all the features of the typical syndrome have been described as Scimitar variant, but the incidence is rare. Familial occurrence is exceptional and limited to few cases in literature. We report two sibling diagnosed with an uncommon variant of the Scimitar syndrome.

Background— Improvement in outcome of infants born with congenital heart defects has been accompanied by an increasing frequency of late arrhythmias. Ablation is difficult because of multiple tachycardias in the presence of complex anatomy with limited accessibility. We report on remote-controlled ablation using magnetic navigation in conjunction with 3D image integration in patients with previous intra-atrial baffle procedures. Methods and Results— Thirteen patients (8 male; age, 30.5±8 years) with supraventricular tachycardia (SVT) underwent catheter ablation. Group A had a medical history of a Mustard or Senning operation, whereas group B had undergone total cavopulmonary connection. A total of 26 tachycardias were treated in 17 procedures (median cycle length of 280 ms). Group A patients had more inducible SVTs than group B, and all index SVTs were located in the remainder of the morphological right atrium in all but 1 patient. Retrograde access through the aorta was performed and led to successful ablation, using magnetic navigation with a very low total radiation exposure (median of 3.8 minutes in group A versus 5.9 minutes in group B). Only 1 of 13 patients continued to have short-lasting SVTs despite 3 ablation procedures during a median follow-up time of >200 days. Conclusions— Remote-controlled catheter ablation by magnetic navigation in combination with accurate 3D image integration allowed safe and successful elimination of SVTs, using an exclusively retrograde approach, resulting in low radiation exposure for patients after intra-atrial baffle procedures (Mustard, Senning, or total cavopulmonary connection).