Citations

Abstract Background: Specialised knowledge in adult congenital heart disease is crucial but often lacking, particularly in resource-limited settings. The Global Conversations in Adult Congenital Heart Disease webinar series was initiated to provide accessible, global education via virtual platforms. Objective: This study evaluates the attendance patterns, participant demographics, knowledge outcomes, and audience feedback of the Global Conversations in Adult Congenital Heart Disease webinar series , analysing 19 monthly sessions conducted from October 2023 to April 2025. Methods: Registration data, session viewership, and total series reach were recorded. Demographics were collected per session. Pre- and post-session quizzes were used to assess changes in knowledge; scores from these independent groups were compared using the Mann–Whitney U test. Post-webinar surveys collected improvement suggestions. Results: Out of 1,956 registrants from 89 countries, 54.6% attended the sessions, representing 1,068 participants from 64 nations: mainly Colombia (30.9%), Peru (18%), the USA (14.1%), and Mexico (9.9%). Median quiz scores improved from 50% pre-session ( n = 120) to 100% post-session ( n = 108), a statistically significant gain ( p = 0.035). Notably, 29% had no prior adult congenital heart disease education. Most post-webinar survey respondents rated case presentations and discussions as excellent (75.0%) or good (20.1%). Qualitative feedback suggested areas for improvement included audiovisual quality, audience engagement, content delivery, and language accessibility. Conclusion: The Global Conversations in Adult Congenital Heart Disease webinar series successfully engaged a diverse international audience and showed significant differences in quiz scores between pre- and post-session independent groups, demonstrating the potential benefit and feasibility of virtual education in bridging gaps in adult congenital heart disease training, particularly in resource-limited countries.

Background An increasing number of patients with congenital heart disease (CHD) are pursuing pregnancy with the potential for cardiovascular complications. This study aimed to establish patient‐centered national research and care priorities to improve pregnancy‐related outcomes for individuals with CHD. Methods This mixed‐methods study used a modified Stakeholder Engagement in Question Development methodology to systematically identify patient‐centered priorities. Key activities included consortium engagement (phase 1), patient and provider questionnaires (phase 2), and an in‐person facilitated meeting to explore survey results and follow‐up virtual focus groups (phase 3). Reflexive thematic analysis was used to synthesize short‐ and long‐term research priorities (phase 4). Results Three overarching goals emerged: (1) improving access to specialized CHD, cardio‐obstetrics, and mental health care; (2) improving quality and consistency in clinical care; and (3) increasing patient and community engagement. These goals were then expanded into 5 central themes: (1) communication within the health care setting; (2) community engagement; (3) ancillary clinical support; (4) integration of patient‐reported outcomes; and (5) implementation, education, and knowledge mobilization. Short‐term (1–5‐year) goals included expanded telemedicine use, best practice recommendations for multidisciplinary care coordination, and targeted educational resources. Long‐term (5–10‐year) goals included expansion of adult CHD and cardio‐obstetrics programs, integration of mental health services, and advocacy to improve insurance coverage. Conclusions The consortium provided a national, community‐driven prioritization that highlights actionable pathways to improve pregnancy outcomes for people with CHD. Sustained engagement with patients and community partners is essential to achieving durable improvements across cardio‐obstetric care, education, research, and mental health.

Background: Adults with congenital heart disease (CHD) face ongoing physical, emotional, and psychosocial challenges that impact long-term outcomes. Research is limited on how their health topic interests vary by levels of empowerment. The 15-item Gothenburg Empowerment Scale (GES) assesses CHD patient empowerment across five domains. Objective: Examine the association between patient empowerment levels and patient-prioritized health education topics among adults with CHD. Methods: This cross-sectional study included adults (≥18) with self-reported CHD enrolled in the Empower My Congenital Heart digital study. Participants completed the GES survey and responded to open-ended questions regarding information of interest to them in managing their healthcare. GES scores were divided into tertiles, and responses were grouped into patient-prioritized topics. Descriptive analysis examined associations between empowerment levels and topic preferences. Results: Of 292 eligible patients, mean age was 45.6 ± 14.7 years, 91.4% were Caucasian, and 66.4% were female. The median (25th, 75th) GES score was 62 (57, 68). The most frequently observed patient prioritized topic was CHD health knowledge (73%), followed by interest in building CHD community (52.7%), lifestyle management (23.6%), health care navigation (7.2%), research and representation (5.1%). Participants in the lower and middle GES tertiles more frequently expressed interest in foundational sub-topics such as understanding CHD and surgical history, finding ACHD specialists, exercise and nutrition. In contrast, participants in the highest GES tertile prioritized sub-topics related to aging with CHD, managing menopause, CHD research and legislative activities. Peer support was a common topic across all groups (Figure 1). Patient quotes were stratified by tertile and patient prioritized health topics and subtopics as summarized in table 1. Conclusion: Adults with CHD prioritized varied health education topics depending on their baseline empowerment levels. Those with lower GES scores prioritized foundational information and guidance, while those with higher scores prioritized community-oriented and research-related topics. These findings could help tailor CHD patient-centered education strategies based on individual empowerment profiles.

Background: Digital health offers a potential solution to support adults with congenital heart disease (CHD), filling the critical gap to help maintain recommended lifelong care with adult CHD specialists. However, its design and implementation require a rigorous scientific approach to make it scalable and usable for the target population. Objective: To pilot test the acceptability and feasibility of a digital health intervention to support lifelong healthcare for adults with CHD. Methods: Using a community-based participatory research and a behavioral theory-based approach, we developed and piloted a digital tool, Empower My Congenital Heart (EmpowerMyCH), within the web—and mobile-based Eureka Digital Research platform at UCSF. Intervention components within EmpowerMyCH include exhibits (expert and peer-developed learning modules on CHD-related topics such as finding specialists or navigating visits, tests, procedures, etc.), peer support, and a digital medical passport (Figure 1). Participants receive an exhibit with study measure surveys every two months, with a two-month completion window. Participant satisfaction with the digital tool is measured at six months using the Client Satisfaction Questionnaire-8 (CSQ-8), a validated survey with scores ranging from 8 to 32; higher scores indicate higher satisfaction with the digital tool. Results: Of the 519 participants recruited, 495 were eligible adults with CHD, 445 consented, and 6 withdrew. The median age was 43 (ranging from 20 to 85) years, and 30.1% were males. Survey completion rate was the highest at 88.7% during the first two months after enrollment and 53.5% at 8 months. Of the five exhibits delivered so far, over 87% of participants rated the exhibits to be helpful (Figure 2). Participants found the exhibits readable, easily accessible, motivational, useful, and educational (Figure 3). The median (25th, 75th) CSQ-8 score was 21 (18, 25) among 144 participants who completed the survey. Conclusions: EmpowerMyCH, the digital health tool, appears to be acceptable to most adults with CHD to support and educate them in navigating their healthcare. The tool and its contents are accessible, user-friendly, and responsive to the needs of the CHD community, resulting in high satisfaction rates. The feasibility rates and satisfaction scores are similar to or higher for EmpowerMyCH than those of prior digital health studies. Future hybrid intervention trials can demonstrate EmpowerMyCH‘s effectiveness.

Background: It is currently unknown whether patient engagement in adult congenital heart disease (CHD) care is influenced by social determinants of health (SDOH) such as race/ethnicity, education, and income. Adapting from the chronic care model, patient engagement, defined as the knowledge, skills, ability, and willingness to manage one’s health, can minimize lapses in care and improve CHD care outcomes. Methods: This cross-sectional study analyzes data from patients aged 18 and older with a self-reported diagnosis of CHD enrolled in a digital health research study called Empower My Congenital Heart. Patient engagement was measured using the Gothenburg Empowerment Scale (GES). We compared mean GES scores across demographic categories (race/ethnicity, education, and income), using independent samples t-tests or one-way ANOVA as appropriate. Additionally, we conducted a multivariate linear regression analysis to evaluate the impact of race/ethnicity, education, and income on GES scores, adjusting for age, gender, marital status, parental status, and employment status. Results: Of 323 adult CHD patients, the mean age was 45.6 ±15 years, 32.5% were males, 89.9% were non-Hispanic White, 29.7% had less than a Bachelor's degree, and 43.5% had less than $100,000 annual household income. The mean GES score was 61.8 ± 8, with significantly higher scores observed for non-Hispanic White identifying individuals (p=0.006) and those with a Bachelor's or higher level of education (p=0.005), while no difference across income levels (p = 0.394) (Figure 1). Linear regression analysis demonstrated that race and ethnicity remained significantly associated with GES scores (Table 1). Conclusions: Race/ethnicity and education level (in the bivariate analysis only), but not income, are the SDOH variables significantly associated with how empowered a CHD patient is in managing their health care. Future interventions that target enhancing patient engagement and self-management skills should take into consideration the influence of these demographic and social factors.

Background: Critical congenital heart disease (CCHD) screening algorithms based on pulse oximetry have up to 27% false positive rate at high altitudes (>2500 m) despite altitude-specific cutoff changes. We examined the added value of an adult-based AI model applied to phonocardiography (AI-PCG) in the digital stethoscope EKO Core 500 in these settings. Research Question: What is the diagnostic performance of AI-PCG model compared to pulse oximetry in detecting neonatal CCHD across different altitudes in Latin America? Methods: This observational, prospective, case-control study included newborns born at different altitudes from 0 to 4380 meters in Peru, Mexico, Colombia and Bolivia. All underwent preductal and postductal oximetry at least 18 hours after birth, electrocardiography and PCG with the digital stethoscope. All CCHD cases were confirmed by echocardiography. Non-CCHD cases were defined by echocardiography or clinically if they were alive for 1 month and had 1) negative pulse oximetry, 2) no hospitalization due to cardiac or pulmonary causes and 3) no cyanosis or pneumonia. Those with abnormal pulse oximetry, genetic syndromes or murmur detection underwent echocardiography. Diagnostic performance metrics [area under the receiving operating characteristic curve (AUROC), sensitivity, specificity and false positive rate] were evaluated per modality. Results: A total of 1152 newborns were enrolled, 725 at <2500 m [13 (1.8%) with CCHD] and 427 at >2500 m [6 (1.4%) with CCHD]. Out of 19 CCHD cases, 17 had positive pulse oximetry and 9 had a positive AI-PCG model. One newborn with severe coarctation of the aorta and atrial septal defect had negative pulse oximetry and AI-PCG model. Pulse oximetry showed superior AUROC (0.932 vs 0.664), sensitivity (89.5% vs 47.4%), specificity (97% vs 85.5%) and lower false positive rate (3% vs 14.5%) compared to the AI-PCG model across altitudes. Diagnostic accuracy varied with altitude (Figure): at <2500 m, pulse oximetry showed higher AUROC (0.999 vs 0.612) and lower false positive rate (0.1% vs 16%) than AI-PCG model, but at >2500 m, pulse oximetry had similar AUROC (0.794 vs 0.774) and lower false positive rate (7.8% vs 11.9%) than the AI-PCG model. Conclusion: Pulse oximetry has superior diagnostic performance than an adult-based AI-PCG model when screening for neonatal CCHD at <2500 m, but similar performance is found >2500 m.

Background There is a global mismatch between the number of adults with congenital heart disease and adult congenital heart disease (ACHD) cardiologists, potentially impacting patient outcomes. This survey explores factors influencing trainees and cardiologists' career choices in ACHD. Methods An online, anonymous global survey on demographics, ACHD as a career choice, encouraging and deterring factors assessed via a 5‐point Likert scale and open‐ended questions on recommending ACHD was distributed through targeted emails and social media. Responses meeting a 75% completion criterion were analyzed using descriptive statistics and thematic analysis. Results Among 811 included responses, most were from women (53.5%), aged 31 to 40 years (48.3%), White individuals (43.3%), non‐Hispanic individuals (85%), from outside the ACHD field (79.0%), and from North America (42.7%). Only 30.9% of non‐ACHD physicians considered specializing in ACHD despite 78.9% recommending it. Encouraging factors included awareness of ACHD significance, mentor influence, and clinical exposure. Key deterrents were inadequate financial incentives, limited job opportunities, and lengthy training. Regional variations showed that longer training duration and lack of compensation incentives were the main deterrents in North America. Suggested solutions included structured training programs, salary improvements, and early ACHD exposure during medical education. Conclusions Less than a third of respondents considered ACHD as a career largely due to inadequate financial incentives, limited job opportunities, and long training duration. Addressing these barriers could enhance recruitment and help meet the growing demands of the ACHD population.

Abstract Background Adults with congenital heart disease (ACHD) frequently experience gaps in lifelong ACHD specialty care, leading to preventable complications, hospitalizations, and premature mortality. However, effective, scalable, accessible, and sustainable strategies to reduce these gaps are lacking. Digital health offers potential solutions but requires a rigorous scientific approach in its design to address the needs of the target population. Objective To describe the development of a theory-based, community co-designed digital health intervention to improve lifelong ACHD care. Methods We integrated theory-based behavioral frameworks, semi-structured qualitative interviews with patients and clinicians, and a community-engaged approach to develop a digital health intervention for ACHD. The primary behavioral target was completing an ACHD specialist appointment. We conducted Capability, Opportunity, Motivation, and Behavior (COM-B)-guided semi-structured interviews with ACHD patients and clinicians to identify barriers to specialized care amenable to a digital intervention and patient-centered goals for the digital tool. The community partners helped develop key intervention objectives, create a theory-driven framework, and specify how each intervention component targets specific COM-B barriers. Results We interviewed 54 participants (37 ACHD patients and 17 clinicians) and engaged 21 community partners representing 4 advocacy organizations. Design objectives emphasized addressing patient loneliness, ensuring accessibility and credibility, and enabling scalability while centering patient perspectives. Participants identified four priorities: providing credible resources, uplifting patient voices, customizing to patient needs, and centering positivity and joy. The digital tool, named by community partners as Empower My Congenital Heart (EMCH), was designed within the web- and mobile-based, Apple- and Android-compatible, Eureka Digital Research platform (University of California, San Francisco). Key intervention components included educational modules, peer support, appointment planning nudges, and a digital medical passport. The EMCH’s theory-driven framework specifies how each intervention component targets specific COM-B barriers to specialized ACHD care. Conclusions The theory-driven, community co-designed EMCH digital tool is a rapidly scalable approach to improve guideline-recommended specialized ACHD care. Future studies will evaluate the acceptability, feasibility, effectiveness, and implementation outcomes to provide insight into a novel tool to reduce preventable morbidity and mortality in ACHD. Trial Registration The National Clinical Trial number for this study is NCT06581484 .

Artificial intelligence (AI) is revolutionizing healthcare by offering innovative solutions for diagnosis, treatment, and patient management. Only recently has the field of pediatric cardiology begun to explore the use of deep learning methods to analyze electrocardiogram (ECG) data, aiming to enhance diagnostic accuracy, expedite workflows, and improve patient outcomes. This review examines the current state of AI-enhanced ECG interpretation in pediatric cardiology applications, drawing insights from adult AI-ECG research given the progress in this field. It describes a broad range of AI methodologies, investigates the unique challenges inherent in pediatric ECG analysis, reviews the current state of the literature in pediatric AI-ECG, and discusses potential future directions for research and clinical practice. While AI-ECG applications have demonstrated considerable promise, widespread clinical adoption necessitates further research, rigorous validation, and careful consideration of equity, ethical, legal, and practical challenges.

INTRODUCTION: There is a significant shortage of specialized Adult Congenital Heart Disease (ACHD) cardiologists despite a rising prevalence of adults with this condition. AIM: Our study explores the specific motivations and deterrents that influence adult and pediatric cardiologists’ ACHD career decisions, which could serve as the basis for future solutions to overcome this shortage in each specific region. METHODS: An anonymous global survey was distributed to adult and pediatric cardiologists and trainees via email, social media, and medical society newsletters. The survey included demographics, ACHD exposure, career considerations, Likert scale ratings, and open-ended inquiries on ACHD career recommendations. Respondents included non-ACHD and ACHD cardiologists (defined as those caring for ACHD with or without formal training). The analysis covered regional variations across continents. Responses with less than 75% completion were excluded. RESULTS: A total of 811 valid responses were collected (53.5% female, 48.3% aged 31-40, and 43.3% White). ACHD cardiologists were 21%, mostly practicing in North America (44.1%) and Europe (32.9%). Almost all ACHD cardiologists (94.7%) recommended it as a career. Among the 641 non-ACHD cardiologists, 85.7% had been exposed to ACHD, however, only 35.1% considered pursuing it themselves. For ACHD cardiologists the top global motivators for pursuing an ACHD career were awareness of the field and its significance, mentor's influence, and sufficient clinical exposure during residency (Figure 1A). Factors that deterred non-ACHD cardiologists included a lack of compensation compared to other cardiology subspecialties, limited job opportunities, and the longer duration of training (Figure 1B). Absence of specialized training and educational programs emerged as a major deterrent in all continents except North America. The lack of mentorship or role models in ACHD was particularly pronounced in Africa and Central and South America. Limited exposure to ACHD during training was a significant issue in Europe and Africa. CONCLUSION: Most ACHD cardiologists recommend a career in ACHD. However, only a few non-ACHD cardiologists recommend it. Influential mentors, clinical exposure motivate; low compensation, lengthy training deter. Regional disparities require targeted interventions for better ACHD cardiologist recruitment.