Transforming Care in Congenital Heart Disease: The Role of Extended Reality in Family and Trainee Education and Procedural Planning.

Extended-Reality Technologies: An Overview of Emerging Applications in Medical Education and Clinical Care.

Background: Transition from paediatric to adult care in congenital heart disease (CHD) represents a pivotal and vulnerable phase that critically influences long-term survival, morbidity, and quality of life. Advances in paediatric cardiology and surgery have generated a rapidly growing population of adults with congenital heart disease who exhibit complex, lifelong, and multidisciplinary needs. However, survival does not equate to cure, and discontinuity of care during adolescence remains a major predictor of adverse outcomes. Despite widespread recognition of their importance, transition programmes are heterogeneous worldwide, and standardised, evidence-based protocols are missing. Objective: This review calls for action acknowledging the urgent need for structured and standardised transition programmes in CHD care, integrating the key elements that should be addressed in any programme to optimise outcomes. Content: Transition should be understood as a multidisciplinary, longitudinal process integrating medical management, patient and family education, psychological preparation, and societal inclusion. Core domains include tailored physical activity, nutritional counselling, cardiovascular risk factor management, infective endocarditis prevention, reproductive health, psychosocial support, and engagement of primary care providers, educators, and employers. Evidence demonstrates that structured transition programmes enhance health literacy, adherence, and self-management, while reducing loss to follow-up. The active involvement of primary care providers, psychologists, educators, and employers is essential to sustain holistic and equitable care. Conclusions: Transition should be reframed as an essential, lifelong component of CHD care. The development and implementation of standardised, multidisciplinary, evidence-based transition protocols are urgently required to ensure continuity, empower patients, and optimise long-term clinical and psychosocial outcomes for adults with CHD.

Three‐dimensional (3D) printing has shown great promise in medicine with increasing reports in congenital heart disease (CHD). This systematic review aims to analyse the main clinical applications and accuracy of 3D printing in CHD, as well as to provide an overview of the software tools, time and costs associated with the generation of 3D printed heart models. A search of different databases was conducted to identify studies investigating the application of 3D printing in CHD. Studies based on patient's medical imaging datasets were included for analysis, while reports on in vitro phantom or review articles were excluded from the analysis. A total of 28 studies met selection criteria for inclusion in the review. More than half of the studies were based on isolated case reports with inclusion of 1–12 cases (61%), while 10 studies (36%) focused on the survey of opinion on the usefulness of 3D printing by healthcare professionals, patients, parents of patients and medical students, and the remaining one involved a multicentre study about the clinical value of 3D printed models in surgical planning of CHD. The analysis shows that patient‐specific 3D printed models accurately replicate complex cardiac anatomy, improve understanding and knowledge about congenital heart diseases and demonstrate value in preoperative planning and simulation of cardiac or interventional procedures, assist surgical decision‐making and intra‐operative orientation, and improve patient‐doctor communication and medical education. The cost of 3D printing ranges from USD 55 to USD 810. This systematic review shows the usefulness of 3D printed models in congenital heart disease with applications ranging from accurate replication of complex cardiac anatomy and pathology to medical education, preoperative planning and simulation. The additional cost and time required to manufacture the 3D printed models represent the limitations which need to be addressed in future studies.

Background: Children with congenital heart disease (CHD) represent a vulnerable population with heightened susceptibility to respiratory infections. However, comprehensive data characterizing COVID-19 outcomes, vaccination benefits, and healthcare disparities in pediatric CHD patients remain limited. This study synthesizes multicenter evidence to evaluate clinical outcomes, vaccination effectiveness, and healthcare inequities affecting pediatric CHD patients during the COVID-19 pandemic. Methods: We conducted a comprehensive analysis integrating data from four primary sources: (1) an international editorial review examining pandemic impacts on CHD care delivery, (2) analysis of national hospitalization data comparing CHD patients with non-CHD pediatric counterparts, (3) a large-scale population-based study evaluating vaccination outcomes in CHD patients, and (4) a multicenter pediatric COVID-19 case series including complex CHD subgroups. Clinical outcomes, vaccination effectiveness, and healthcare access disparities in the Low and Middle Income Countries (LMIC) were systematically analyzed. Results: Analysis of pediatric CHD patients (median age 3 years) revealed significantly higher COVID-19 complications versus non-CHD controls: cardiovascular (tachyarrhythmias aOR 4.1, 95%CI 2.9-5.8), respiratory (mechanical ventilation RR 3.2, 2.1-4.9), and systemic (acute kidney injury aOR 3.4, 2.2-5.3; all p<0.001). While mortality remained low (CHD 1.2% vs non-CHD 0.8%, p=0.21), children <3 years accounted for 40% of cases and 78% of critical illnesses (p<0.001), with 70% showing bilateral lung involvement. Complex CHD anatomy conferred 4.3-fold higher ICU risk (95%CI 2.7-6.8). Vaccination reduced hospitalizations by 87% (aOR 0.13, 0.08-0.22), though disparities persisted with 68% of LMIC patients experiencing delayed cardiac surgeries. Conclusions: While most pediatric COVID-19 cases demonstrate favorable outcomes, children with CHD—particularly infants and those with complex cardiac anatomy—face substantially increased complication risks. COVID-19 vaccination provides significant protection for CHD patients but does not eliminate outcome disparities compared to healthy children. The pandemic revealed critical inequities in CHD care access, highlighting the urgent need for targeted interventions to protect high-risk pediatric populations and address healthcare disparities in resource-limited regions.

Adult Congenital Heart Surgery: Adult or Pediatric Facility? Adult or Pediatric Surgeon?

The man in the mirror: Biventricular device implantation in a patient with dextrocardia with situs inversus totalis

A guide for identification and continuing care of adult congenital heart disease patients in primary care

Nurse educators' experiences of providing education to patients and families

Congenital heart disease: a global public health concern

Congenital heart disease (CHD) is a birth defect of the heart that requires long-term care and often leads to additional health complications. Effective educational strategies are essential for improving health literacy and care outcomes. Despite affecting around 40,000 children annually in the United States, there is a gap in understanding children's health literacy, parental educational burdens, and the efficiency of health care providers in delivering education. This qualitative pilot study aims to develop tailored assessment tools to evaluate educational needs and burdens among children with CHD, their parents, and health care providers. These assessments will inform the design of medical education toys to enhance health management and outcomes for pediatric patients with CHD and key stakeholders. Through stakeholder feedback from pediatric patients with CHD, parents, and health care providers, we developed three tailored assessments in two phases: (1) iterative development of the assessment tools and (2) pilot testing. In the first phase, we defined key concepts, conducted a literature review, and created initial drafts of the assessments. During the pilot-testing phase, 12 participants were recruited at the M Health Fairview Pediatric Specialty Clinic for Cardiology-Explorer in Minneapolis, Minnesota, United States. We gathered feedback using qualitative methods, including cognitive interviews such as think-aloud techniques, verbal probing, and observations of nonverbal cues. The data were analyzed to identify the strengths and weaknesses of each assessment item and areas for improvement. The 12 participants included children with CHD (n=5), parents (n=4), and health care providers (n=3). The results showed the feasibility and effectiveness of the tailored assessments. Participants showed high levels of engagement and found the assessment items relevant to their education needs. Iterative revisions based on participant feedback improved the assessments' clarity, relevance, and engagement for all stakeholders, including children with CHD. This pilot study emphasizes the importance of iterative assessment development, focusing on multistakeholder engagement. The insights gained from the development process will guide the creation of tailored assessments and inform the development of child-led educational interventions for pediatric populations with CHD.

<i>Circulation</i> : Clinical Summaries

Our understanding of the development of congenital heart disease (CHD) across the lifespan has evolved. These include the evidence for the change in demographics of CHD, the observations that lifelong complications of CHD result in CHD as a lifespan disease, and the concept of long windows of exposure to risk that start in foetal life and magnify the expression of risk in adulthood. These observations set the stage for trajectories as an emerging construct to target health-service interventions. The lifelong cardiovascular and systemic complications of CHD make the long-term care of these patients challenging for cardiologists and internists alike. A life-course approach is thus required to facilitate our understanding of the natural history and to orient our clinical efforts. Three specific examples are illustrated: neurocognition; cancer resulting from exposure to low-dose ionizing radiation; and cardiovascular disease acquired in ageing adults. As patients grow, they do not just want to live longer, they want to live well. With the need to move beyond the mortality outcome, a shift in paradigm is needed. A life-course health development framework is developed for CHD. Trajectories are used as a complex construct to illustrate the patient's healthcare journey. There is a need to define disease trajectories, wellness trajectories and ageing trajectories in this population. Disease trajectories for repaired tetralogy of Fallot, transposition of the great arteries and the Fontan operation are hypothetically constructed. For clinicians, the life-course horizon helps to frame the patient's history and plan for the future. For researchers, life-course epidemiology offers a framework that will help increase the relevance of clinical enquiry and improve study design and analyses. A health-service policy framework is proposed for a growing number of conditions that start in the before birth and extend as long as contemporary survival now permits. Ultimately, the goal is the precision delivery of health services that enables lifelong health management, organization of developmental health services, and integration of vertical and horizontal health-service delivery.

Equal access to care for patients with congenital heart disease (CHD) remains unrealized globally. The ASSIST project (Academic Medical Hospitals-Local Institutions collaboration) is an ongoing national quality initiative implemented in low-resource settings in China attempting to reduce gaps in access to CHD care. This study sought to evaluate its feasibility and effectiveness. Shanghai Children's Medical Center, an academic medical center, has partnered with 4 local hospitals in low-resource regions to enhance local CHD programs since 2021. Comparison was made between patients receiving treatments in these 4 local hospitals before (2013-2020) versus after the ASSIST project (2021-2024). In addition, contemporaneous patients receiving treatments in Shanghai Children's Medical Center (2021-2024) were compared with the post-ASSIST cohort of patients. The primary outcome was a composite of postoperative mortality and multiorgan dysfunction. A key secondary outcome was delayed treatment, defined as an interval of more than 6 months between the time of surgery and the time when the clinicians recommended surgery at the initial presentation. The analysis cohort included 11 895 pediatric patients (median age, 2.0 years [25th-75th percentile 0.7-5.0]; 5933 female [49.9%]), with 3333 cases in the pre-ASSIST group, 1566 in the post-ASSIST group, and 6996 in the Shanghai Children's Medical Center group. Lower family educational attainment (odds ratio, 1.50 [95% CI 1.21-1.85]; P<0.001) and lower annual household income (odds ratio, 1.65 [95% CI, 1.14-2.38]; P=0.008) were associated with increased incidence of the primary outcome in the low-resource regions but could be mitigated by the ASSIST project in a multivariable model. There was a change in case mix of the CHDs after the ASSIST project, with a significant increase in more complex cases (35.5% versus 7.3%; P<0.001) and neonatal surgery (9.1% versus 1.5%; P<0.001). A higher portion of patients in the pre-ASSIST group had delayed treatment compared with those in the post-ASSIST group (43.2% versus 23.3%; P<0.001). Primary outcome analyses showed that patients in the post-ASSIST group and the Shanghai Children's Medical Center group had equivalent outcomes (4.4% versus 3.6%; P=0.13). Interhospital partnership appears to be a useful and feasible method to deliver regionalized quality care for pediatric patients with CHD in resource-limited regions.

With the advent of improved medical and surgical care in congenital heart disease, there has been an increase in the number of patients who survive into adulthood, giving rise to a new patient population 'Adults with congenital heart disease'. In the past, morbidity and mortality were the primary concerns for this group. However, with improvements in outcome attention has shifted to other factors such as psychosocial and cognitive functioning. This paper reviews the literature on the cognitive functioning in adult congenital heart disease patients. A total of five relevant articles were retrieved via electronic searches of six databases, including MEDLINE, EMBASE, CINAHL, AMED, PsychINFO, and PubMed. The results displayed a consensus on the presence of some cognitive difficulties in adult congenital heart disease patients. The aetiology of cognitive dysfunctions appears to be multifactorial. The literature is limited by the very small number of studies looking at adults with congenital heart disease, with the majority focusing on cognitive functioning among children with congenital heart disease. However, the presence of cognitive dysfunctions and the resulting impact on the patient's day to day lives warrant for a more detailed and prospective research to enhance the understanding of its aetiology and impact.

The congenital heart disease (CHD) population has seen substantial growth due to advancements in paediatric cardiac care, cardiothoracic surgery, anaesthesia, and intensive care. Although improved surgical interventions have enhanced survival rates for even the most severe defects, such as hypoplastic left heart syndrome, most CHD patients remain palliated rather than cured, requiring lifelong expert care. With increasing survival, new challenges emerge in managing the ageing CHD population, particularly regarding changing medical, psychosocial needs, and the evolving epidemiology of CHD. Imaging plays a pivotal role in CHD care, offering precise anatomical and physiological insights necessary for effective management and risk stratification. The European Association of Cardiovascular Imaging (EACVI) established a shared interest group (SIG) to improve imaging standardization, promote education, and foster research for CHD patients. Multimodality imaging, including echocardiography, cardiovascular magnetic resonance (CMR), and computed tomography (CT), is critical in guiding interventions and improving outcomes. The SIG also addresses gaps in education, research, and global healthcare disparities, ensuring a collaborative and systematic approach to CHD care. Advances in imaging technology, genetic research, and tissue engineering hold promise for further improving the longevity and quality of life for CHD patients in the future.