Advances in paediatric cardiology and cardiac surgery have resulted in increased survival rates among children with congenital heart disease (CHD), leading to a growing population of adults with CHD.1–3 In Asia-Pacific, this epidemiological transition is ongoing and increasingly evident. Yet, health systems in many countries, especially low- and middle-income countries (LMIC), remain underprepared to meet the lifelong, evolving needs of this population. The region’s wide socioeconomic and healthcare diversity complicates consistent care delivery. Awareness that CHD is a chronic, lifelong condition is still evolving, and health systems vary in their preparedness to support adult-focused congenital cardiac care. This paper outlines the region’s primary challenges and proposes pragmatic, context-specific solutions, drawing on regional data and experience.
Epidemiology and Burden of Disease
Asia has the highest birth prevalence of CHD globally, estimated at 9.3 per 1,000 live births translating into a significant cohort transitioning into adulthood annually.4–6 Survival into adulthood is particularly contingent on healthcare system capacity, early diagnosis, surgical intervention and continuity of care; factors often deficient in LMICs. The prevalence of ACHD is roughly estimated at 4–6 per 1,000 adults globally, and similar rates are likely across Asia, although region-wide epidemiological data remain sparse.1–3,7
Country-specific Data Snapshots
Japan, with one of the region’s more comprehensive registries, reported over 400,000 adults living with CHD as of 2007, with approximately 9,000 new adult cases annually — reflecting exponential growth since the 1970s.8 In China, an 18-year echocardiographic study revealed a steady increase in CHD prevalence, increasingly affecting adults requiring lifelong care.9
In India and Pakistan, hospital-based registries highlight delayed presentations and complications due to late diagnoses and socioeconomic barriers. Many adult CHD cases may be first diagnosed in adulthood, often during pregnancy or military screenings.10,11
Indonesia’s COngenital HeARt Disease in adult and Pulmonary Hypertension (COHARD-PH) registry found that 73.4% of adult congenital heart disease (ACHD) cases were atrial septal defects, with two-thirds progressing to pulmonary arterial hypertension at diagnosis.12 A Taiwanese study reported a 4.4% incidence of pulmonary arterial hypertension in ACHD patients, with significantly higher mortality in women and those with complex lesions.13 South Korea saw a fivefold rise in ACHD admissions for heart failure, arrhythmias, and Fontan-related complications from 2005 to 2017.14 These trends illustrate the growing burden and complexity of ACHD care.15 Most LMICs in the region remain under-resourced to manage this increasingly prevalent and resource-intensive population.
Regional Disparities in ACHD Care
Variability in Health System Capacity
The Asia-Pacific region encompasses a broad spectrum of health systems, from highly developed nations, such as Japan, Australia, South Korea and Singapore, to LMICs, such as Nepal, Myanmar, Cambodia, and rural regions of India, Pakistan and Indonesia.
In high-income countries (HICs), specialised ACHD centres often exist within academic hospitals, staffed with multidisciplinary teams and supported by national registries and funding schemes. These centres provide lifelong care, enable early detection of complications, and facilitate reproductive counselling and transition planning.16–18
In contrast, many LMICs still lack dedicated ACHD expertise and units. Paediatric cardiologists frequently continue caring for adult patients, often without the necessary training in adult comorbidities, such as hypertension, ischaemic disease or arrhythmias. Adult cardiologists, in turn, may lack familiarity with congenital defects. This ‘care gap’ results in suboptimal surveillance and treatment. Furthermore, access to care is often concentrated in urban centres, leaving rural populations underserved.10,11,19
Diagnostic tools such as cardiac MRI, catheterisation labs, or electrophysiology mapping systems are often only available in high-level urban institutions. This results in delayed or missed diagnoses, particularly in adults with complex conditions who require advanced imaging and multidisciplinary review.10,18,20,21
This wide disparity in healthcare infrastructure and workforce directly influences access to ACHD care and underscores the need for region-specific strategies to address the growing ACHD population effectively.
Lack of Data and Policy Recognition
ACHD remains under-recognised in national health policies in many Asia-Pacific countries. Without national registries, it is difficult to assess prevalence, outcomes, or care gaps accurately. While Japan (JNCVD-ACHD registry), Australia, New Zealand (Fontan registry) and Indonesia (COHARD-PH) have made progress, most countries lack coordinated surveillance efforts and policy development.12,16,22
Public health planning and funding are still predominantly directed toward childhood CHD or acquired adult heart disease, leaving ACHD care fragmented and under-resourced.
Key Challenges in ACHD Care
The key challenges in ACHD care fall into three domains: clinical complexity, health system limitations and socioeconomic barriers. (Table 1).
Major Clinical Burdens and Complications
Comorbidities and Late Complications
The clinical presentation of ACHD varies widely across the Asia-Pacific due to disparities in healthcare infrastructure and socioeconomic status. In resource-limited settings such as rural Indonesia, Pakistan and parts of India, many patients with unoperated or palliated CHD survive into adulthood and present with advanced complications including pulmonary hypertension, arrhythmias and heart failure.7,10,11
In contrast, countries with advanced paediatric cardiac services now face an increasing need for complex reoperations or catheter-based interventions in adulthood.19,23 These include management of valve disease, residual shunts, or ventricular dysfunction, often necessitating lifelong care.14,15 As patients age, they also become more vulnerable to non-congenital comorbidities, such as diabetes, hypertension and chronic kidney disease.24
Reproductive Health and Pregnancy Risk
Women with complex CHD (e.g. Fontan circulation, Eisenmenger syndrome) face elevated maternal and foetal risk during pregnancy. Mortality is especially high in women with pulmonary hypertension or cyanotic lesions, particularly where cardio-obstetric expertise is lacking.25–27
Across the region, many women receive no preconception counselling and may first present during pregnancy, often undiagnosed. Dedicated cardio-obstetric clinics are rare outside tertiary hospitals, and contraceptive advice is inconsistently provided.28
Psychosocial Burdens and Quality of Life
ACHD patients experience higher rates of depression, anxiety, unemployment and social isolation, especially in LMICs where chronic illness is often stigmatised.29 In Japan, unemployment among ACHD patients is estimated at 13.5%, with significantly lower social functioning scores compared to peers.30 Similar findings from Vietnam and Pakistan highlight the lack of psychosocial support and mental health resources.31,32
Health Systems and Care Delivery Challenges
Transition of Care Gaps
Transition from paediatric to adult congenital care remains poorly implemented in much of Asia-Pacific. In countries like Malaysia, Thailand and Vietnam, transition practices are informal, often relying on individual clinician initiatives. Even in Japan, where ACHD centres exist, structured handover protocols are underutilised.17 A Taiwanese study showed only 40% of adolescents successfully transitioned to adult care.33 Barriers include lack of structured transition programmes, insufficient adult CHD specialists, and limited awareness among patients and families.34,35
Limited Specialised ACHD Centres
Many countries lack dedicated ACHD centres and trained personnel, leading to fragmented care. While surgical and interventional care have advanced rapidly, adult follow-up remains poorly coordinated, particularly in LMICs where ACHD services are scarce. In many LMICs, adult CHD patients are commonly managed by paediatric cardiologists due to a lack of trained adult providers and no formal ACHD training pipelines.7,10
A nationwide Japanese survey noted significant regional disparities in ACHD services.20 Major ACHD centres, if present, are predominantly located in urban areas, potentially limiting access for rural populations.
Workforce and Training Shortfalls
There is a critical shortage of ACHD-trained professionals in the region. The Asia-Pacific Society for Adult Congenital Heart Disease (APSACHD) survey found fewer than one ACHD specialist per 10 million population in most countries.7 Adult cardiologists often lack exposure to congenital anatomy, while paediatric cardiologists may be unfamiliar with adult comorbidities.
Formal ACHD training is available only in a few HICs (e.g. Japan, Singapore, Australia). Most cardiology fellowships do not include ACHD, and training often depends on international exchanges. Expertise in congenital imaging, reoperations, and electrophysiology is also limited, further constraining service delivery.10
There is also a substantial lack of cardiac surgeons in Asia, about 1 per 25 million population.36
Inadequate Infrastructure and Centralisation
ACHD care requires access to advanced imaging (cardiovascular MRI, CT), catheterisation labs, and congenital cardiac surgical facilities. These services are costly and primarily available in urban academic centres.21 In LMICs, patients often travel hundreds of kilometres for follow-up, leading to poor adherence and delays.
Financial and Geographic Barriers
Access to ACHD services remains highly inequitable. In rural India, China and southeast Asia, geographic barriers, out-of-pocket costs and lack of local expertise limit timely diagnosis and care. In many countries, adult congenital procedures are not covered by insurance programmes that are designed for children.10,11
Private insurance often excludes congenital conditions, leaving adult survivors vulnerable to catastrophic health expenses. Cultural barriers, including language, gender norms and health literacy, further exacerbate disparities.
Strategic Solutions for Improving ACHD Care in Asia-Pacific
Improving care for ACHD in the Asia-Pacific region requires a comprehensive, multipronged approach addressing systemic, workforce, clinical and socioeconomic gaps (Figure 1 and Table 2).
Development of Specialised ACHD Centres
Optimal ACHD care necessitates a multidisciplinary team comprising cardiologists, congenital surgeons, electrophysiologists, imaging specialists, nurses, psychologists and reproductive health experts.21,37 Evidence indicates that management within dedicated ACHD centres is associated with lower mortality and complication rates compared to general cardiology care.15
A ‘hub-and-spoke’ model, where tertiary ACHD centres (hubs) support regional hospitals (spokes), has been effective in expanding access, particularly in geographically diverse populations. Hubs provide advanced diagnostics, surgical expertise, shared care protocols, and clinician training. Patients with moderate to complex lesions should be managed at designated specialist centres, which also serve as national or regional hubs.18,21,38
Scaling this model across the region can improve care coordination, optimise resource allocation, and enhance outcomes across diverse healthcare settings.
Implementation of Structured Transition Programmes
Structured transition programmes improve care continuity, promote self-management, and reduce unplanned emergency visits.39 Successful models like Ready Steady Go (UK) and Stepstones (Europe) offer developmentally appropriate tools, from early adolescence through young adulthood.39
In Taiwan, transition protocols now include joint paediatric–adult clinics, readiness assessments and coordinated documentation.33 In South Korea, pilot projects combine transition clinics with peer mentoring, while Australia’s Westmead Hospital and National Heart Centre Singapore models embed psychological and reproductive counselling into routine adolescent care and can provide a template for the region.
Wider implementation across the region will require national policy endorsement, cross-sectoral coordination and appropriate workforce training.
Workforce Training and Task Sharing
The shortage of ACHD-trained professionals can be mitigated through structured ACHD fellowships, continuing medical education, and task-sharing models where general adult cardiologists are trained to manage simple or stable CHD cases, especially in rural and underserved areas.
Scalable education is available through virtual platforms, such as Heart University, APSACHD webinars, and International Society of Adult Congenital Heart Disease (ISACHD) programmes. Japan and Singapore have successfully integrated ACHD into national cardiology fellowship curricula. Formal certification, credentialling, and continuing medical education accreditation can further institutionalise ACHD competencies.
Patient and Family Empowerment
Patient-centred care depends on well-informed, engaged individuals and families. Education initiatives, peer support groups, and targeted health literacy efforts improve treatment adherence and psychosocial outcomes.
Mobile learning platforms and self-management tools can enhance patient confidence and autonomy, particularly among adolescents and young adults transitioning into adult care.15,39
Data Collection and National Registries
National ACHD registries are critical for tracking clinical outcomes, planning services, and shaping policy. They also provide a foundation for research and inform region-specific care models. Examples include:
- Japan (JNCVD-ACHD) and Indonesia (COHARD-PH) use registry data to guide workforce planning, research priorities, improve patient care and service delivery.12,20
- Australia and New Zealand: multicentre registries with linked outcome data have been instrumental in forming national guidelines and health system planning.18
Policy and Regional Collaboration
Addressing the burden of ACHD in the Asia-Pacific requires robust policy frameworks, financial protection, and regional collaboration. These components are essential to narrowing inequities across low-, middle-, and high-income settings (Figure 1 & Table 2).
Policy Frameworks and Insurance Inclusion
Most national health systems in Asia-Pacific lack formal recognition of ACHD as a chronic condition requiring lifelong surveillance and intervention. Public insurance schemes typically focus on paediatric congenital heart interventions, excluding adult reoperations and transcatheter procedures.
In Vietnam, policy changes supported by philanthropic partners now subsidise annual follow-up and diagnostic testing for adult CHD survivors. In India, advocacy by the Indian Heart Association has led to some state-sponsored catheterisations for adults with CHD.
Efforts must focus on including ACHD procedures under national health insurance coverage, integrating ACHD within noncommunicable disease frameworks and funding transition care and adult follow-up through national health budgets.
Public–Private Partnerships and Financial Models
Addressing financial barriers requires innovative funding mechanisms. Examples include:
- Microinsurance schemes in rural regions (e.g. in India or the Philippines).
- NGO-government collaborations, in Cambodia and Myanmar.
- Public–private hospital partnerships: Organisations such as Yayasan Jantung Indonesia and Heartbeat Vietnam (VinaCapital Foundation) partners with private hospitals to deliver affordable ACHD surgeries, including adult valve replacements.
These models demonstrate how multisectoral cooperation can improve access to care for underserved populations.
Regional Collaboration and Capacity Building
Effective regional collaboration is central to addressing the complex needs of adults with CHD across Asia-Pacific and is vital in overcoming disparities in expertise, infrastructure, and access gaps in ACHD care.
APSACHD has played a pivotal role through regional conferences, consensus building and virtual education.7
Key partnerships include global organisations, such as ISACHD, the European Society of Cardiology ACHD Working Group and the American Heart Association. These organisations facilitate knowledge exchange, mentorship and global advocacy.37,40
A promising model is the ‘twinning’ programme, which pairs high-resource ACHD centres (e.g. Singapore, Australia, Japan) with emerging programmes in LMICs like Malaysia, Vietnam or the Philippines. These partnerships may include:
- formal Memorandum of Understanding with defined goals and training plans;
- fellowships for early-career ACHD physicians;
- shared clinical protocols for complex interventions, pregnancy and transition planning;
- joint registries and multicentre research initiatives; and
- virtual multidisciplinary case discussions and ongoing clinical mentorship.
By leveraging data and patient stories, collaborative groups can influence national health ministries, regional WHO offices, and policy stakeholders to recognise ACHD as a healthcare priority. Models like the Children’s HeartLink Centre of Excellence framework (https://www.childrensheartlink.org) can be adapted for adult care development in LMICs.
Importantly, collaboration must focus on long-term capacity building, rather than short-term service delivery. Sustainable partnerships must develop local expertise, systems and leadership.
Leveraging Technology for Collaboration
Digital tools can play a transformative role in extending the reach and continuity of ACHD care across borders:
- Telemedicine platforms facilitate cross-border case consultations, virtual clinics and clinician education.
- Mobile health solutions enable patients in remote areas maintain follow-up, track medications and access emergency support.
Digital integration also supports regional registries and training networks, essential for standardising ACHD care across varied healthcare settings.41
Regional Registries and Research Networks
Establishing shared registries enables benchmarking, outcome tracking, and policy advocacy. The China CHD Study Network spans 10 provinces and tracks outcomes of Fontan and Eisenmenger syndrome patients. Australia and New Zealand are expanding the ANZ ACHD and Fontan registries to include adult-focused indicators.22
Such data inform national strategies and enable multicentre research trials, particularly important in rare or complex lesions.12,16,42
Advocacy and Public Awareness
Limited public awareness remains a major barrier. Successful initiatives include:
- School-based screening programmes in Malaysia, India and China, which have improved early detection.
- Community campaigns highlighting that CHD is a lifelong condition requiring ongoing surveillance.
- Emphasis on reproductive health and the importance of preconception counselling and planned pregnancies.
To empower patients, countries should invest in community-based peer support, e-health tools, and culturally appropriate educational materials.
Conclusion
The Asia-Pacific region stands at a pivotal moment in CHD care. While paediatric survival has markedly improved, adult follow-up remains fragmented, under-resourced and unevenly distributed.
This review underscores the complex, lifelong nature of ACHD and the urgent need for integrated, regionally adapted strategies. Persistent challenges include delayed diagnosis, inadequate transition pathways, workforce shortages and limited policy recognition. These are further exacerbated by stark disparities between urban and rural populations, HICs and LMICs, and tertiary versus peripheral hospitals.
Despite these challenges, the path forward is clear. A multidisciplinary, lifelong care model — centred on specialised ACHD centres, strengthened by structured transition programmes, bolstered through workforce development and digital innovation, and driven by regional collaboration — can significantly narrow the current care gap.
Sustained leadership from regional societies, ministries of health, and academic institutions will be essential to embed ACHD into national health strategies and training frameworks. At the same time, empowering patients, engaging communities and advancing cross-border research will be critical to ensuring that progress is both equitable and enduring.
“Congenital heart disease doesn’t end with childhood — neither should our care.”