Surgery for CHD in Malaysia—setting standards for lower and middle-income countries

Abstract

The surgery for congenital heart diseases in Malaysia started in 1992 under the purview of the adult cardiac unit within the framework of the General Hospital. This unit catered for the whole country within its landscape of limited manpower and inadequate infrastructures. Recognizing the significant burden of heart diseases, the Paediatric and Congenital Heart Centre (PCHC) at the National Heart Institute in Kuala Lumpur was established in 2012. Initially, PCHC stood as the sole hospital undertaking congenital heart surgeries in Malaysia. However, in recent years, hospitals affiliated with the Ministry of Health and University Hospitals have begun establishing their own units to address the escalating burden of congenital heart disease. Nevertheless, PCHC remains pivotal, performing 800 to 900 open heart surgeries annually, comprising over half of Malaysia’s yearly caseload. Notably, a majority of these patients receive funding from the government. Despite the increased surgical capacity, challenges persist, leading to disparities in access to care for many patients in Malaysia. This article delves into the problems and challenges faced by the Paediatric and Congenital Heart Centre in providing cardiac surgeries within a resource-limited setting.

Introduction

Malaysia, a middle-income country situated in Southeast Asia, exhibits characteristics typical of economies within this income bracket. Projections indicate that Malaysia possesses a population of 34.67 million as of 2023, and individuals aged 0–14 years constituted 22.6% of the population in the same year [1]. The current birth rate for 2023 is 15.87 births per 1000 people. The infant mortality in 2023 was 5.152/l000 live births. Allocating a budget Malaysia ringgit (MYR) 36.1 billion for the year 2023 [2], the country reports a Gross Domestic Product (GDP) per capita of US$13,910 in 2024 [3] and holds the 42nd position in the global ranking of the World’s Best Healthcare Systems.

Congenital heart disease (CHD) is one of the most frequently diagnosed congenital disorders afflicting approximately 0.8 to 1.2% of live births worldwide [4, 5]. With an average of 500,000 deliveries a year, the number of children born with CHD is about 5000 a year, of which two-thirds will require surgical intervention. Hence, the number of children requiring surgery each year is about 2000 to 3000 (Ministry of Health, Malaysia, data). The funding landscape for CHD treatment primarily relies on the government health budget, given the absence of a National Health Care Insurance system. Financial support occasionally stems from public donations, with minimal contributions from private funding, reflecting features commonly associated with middle-income nations.

The healthcare facilities in Malaysia that offer services for CHD can be divided into the following:

1. Government hospitals (under Ministry of Health)

2. National Heart Institute better known as Institut Jantung Negara (IJN) under the Ministry of Finance

3. University hospitals

4. Private hospitals

The National Heart Institute (IJN), a tertiary cardiac hospital under the Ministry of Finance, was established with a mission to deliver premier cardiac care to Malaysians. Catering to a diverse patient base, IJN treats 60% of government-referred patients, with an additional 30% covered by private insurance, while the remaining 10% comprise private cash-paying and foreign patients.

With a steadfast commitment to excellence, IJN consistently performs 800–900 paediatric and congenital heart surgeries annually, playing a central role in addressing complex CHDs nationwide. Alongside IJN, eight government hospitals have been conducting paediatric cardiac surgeries since 2016, collectively handling 250 to 470 cases yearly. Notably, Hospital Serdang leads the cohort, contributing approximately 200 to 300 cases annually, encompassing procedures ranging from atrial septal defects to arterial switch and interrupted arch repairs.

Among university hospitals, Hospital Universiti Sains Malaysia (HUSM) undertakes 35 to 61 cases annually, with a notable milestone of 43 open-heart surgeries in 2023, including 25 closures of ventricular septal defects, ten atrial septal defects, four tetralogy of Fallot repairs, two right ventricular outflow tract widening, and one atrioventricular septal defect repair.

Private hospitals also play a role, albeit with a smaller caseload, contributing to the collective effort in managing CHDs in Malaysia.

History and development

The inception of the Cardiac Surgical/Cardiology Programme in Malaysia unfolded gradually during the 1990s within the framework of the General Hospital, initially falling under the purview of the Adult Cardiac Programme. Within this structure, Paediatric Cardiology operated as a division within the Adult Cardiology Unit. It was not until the establishment of the IJN in 1992 that Paediatric Cardiology gained autonomy, separating from the Adult Cardiology unit to function as an independent department.

Initially, paediatric cardiac surgeries were conducted by cardiac surgeons who also handled both adult and paediatric work, indicating a lack of specialized focus on paediatric cases. The unit faced challenges stemming from the absence of a proficient and dedicated multi-disciplinary team, coupled with inadequate infrastructure. These challenges mirrored those identified by Vervoort et al. in their article addressing global access to cardiac surgical care [6]. The deficiencies in dedicated expertise and infrastructure were recognized as shared issues, emphasizing the need for comprehensive improvements in the paediatric cardiac surgical landscape.

Transforming into a world-class paediatric cardiac programme

Similar to many other low- and middle-income countries (LMICs), Malaysia initially relied on local cardiac surgeons, primarily trained as adult surgeons, to conduct paediatric cardiac surgeries. However, their training included only a brief period in paediatric cardiac units in high-income countries (HICs), leading to a deficit in exposure, knowledge, and experience in neonatal and complex cardiac procedures. In our efforts to address this gap, various strategies have been implemented. Notably, “fly in and out” missions were organized, wherein surgeons from renowned centres visited for a week to perform surgeries. While these initiatives had limitations in transferring skills, they often served as opportunities to address the most high-risk and challenging cases on our surgical waitlist.

In 2005, our collaboration with Children’s Heart Link marked a significant turning point, as a team from Birmingham Children’s Hospital was specifically assigned to assist, educate, and train our local team in paediatric cardiac care. This approach differed from previous missions, adopting a problem-targeted strategy with the objective of empowering the local team with comprehensive knowledge and skill sets in surgery, anaesthesia, perfusion, and intensive care. The initial visit in 2006 comprised a multidisciplinary team, including a surgeon, cardiologist, anaesthetist, intensivist, perfusionist, and intensive care nurses. Over subsequent visits, the team members gradually transitioned to focus specifically on addressing the challenges within our unit.

The Birmingham team played a pivotal role in transferring surgical skills for neonates and infants, implementing perfusion techniques in neonates, and enhancing our postoperative intensive care—highlighting key emphasis on respiratory and infection bundle cares. As our unit matured, Children’s Heart Link continued to support us in advancing into Adult CHD surgery and provided training for nurses specializing in postoperative adult care. This expansion led to the establishment of specialized clinics, including combined obstetrics and cardiology clinics, aortopathy clinics, and Marfan clinics. Initiatives like the pulmonary hypertension advocacy group were also instituted to raise awareness among patients, the public, and healthcare practitioners.

Recognizing the pivotal role of nursing staff in a successful neonatal and paediatric programme, a nurse education programme was instituted in collaboration with Children’s Heart Link. This programme aimed to empower nursing staff to assume greater responsibility in neonatal management, complementing the efforts of the medical staff. In 2018, Children’s Heart Link designated the National Heart Institute as a Centre of Excellence, entrusted with providing training for cardiac units in Southeast Asian countries. This designation underscores our commitment to advancing paediatric cardiac care and disseminating knowledge within the region.

In addition to our collaboration with Children’s Heart Link, our institute has forged a significant partnership with Shizuoka Children’s Hospital in Japan, formalized through a memorandum of understandings (MOU) signed in 2013. This collaborative initiative has facilitated reciprocal visits, enabling teams from both institutions to share constructive and informative knowledge and skill sets. This partnership has streamlined the utilization of telemedicine facilities, allowing for real-time case discussions between the two institutions. Through this platform, cardiologists and surgeons have had the opportunity to observe live cardiac interventional procedures and surgeries, fostering a dynamic exchange of expertise and insights.

Current position

In 2005, the completion and initiation of services for a new facility marked an expansion in our paediatric healthcare infrastructure. This development elevated the bed capacity of the general paediatric ward to 52, while concurrently augmenting the paediatric Intensive Care Unit (ICU) to 24 beds from its initial ten. Alongside this structural enhancement, a corresponding increase in human resources was observed, notably with the addition of seven paediatric cardiologists and two intensivists. Moreover, there was a notable rise in the number of designated paediatric and congenital heart surgeons, totaling four; this was complemented by an increase in the number of operating room nurses and two assigned anaesthetists providing their services to paediatric operating lists. Consequently, this enhancement in infrastructure and manpower has significantly elevated the programme’s operational capacity, with the annual number of cases now ranging between 800 and 900.

In the year 2023, our paediatric cardiac surgical team comprised a dedicated roster of four cardiac surgeons exclusively focused on paediatric and congenital heart surgeries. In terms of anaesthetists, two were specifically assigned to paediatric lists, while one was allocated to both adult and paediatric cases. The weekly surgical schedule accommodated a total of 24 operating slots.

Capacity building and sustainability

Our mission is to deliver the highest quality care to children afflicted with CHD. Annually, our cardiology clinic attends to a substantial caseload, receiving between 1100 and 1200 new patients. A significant proportion of these cases necessitate surgical intervention. Furthermore, our patient roster includes those on the waiting list from the previous year’s referrals, along with individuals awaiting second palliative or definitive surgeries. As a result, the cumulative effect leads to a waiting period of at least 1 year for elective cases.

A report by Wamala et al. [8], analysing data from participating institutions in the International Quality Improvement Collaborative for Congenital Heart Disease (IQIC) highlighted a correlation between higher surgical volume and increased resources such as operating rooms, surgeons, anaesthesiologists, cardiologists, intensivists, and intensive care nurses, as well as beds. Essentially, more facilities and a highly skilled medical personnel contribute to a higher volume of cases. In our context, we have expanded our capacity by implementing the following initiatives:

1. Case mix planning: A well-planned case mix would accommodate both complex cases and simple congenital cases. This strategy mitigates the risk of cancellations due to insufficient operating room (OR) time, thereby enhancing surgical volume and effectively reducing the waitlist.

2. Cardiology intervention: Our team of interventional cardiologists play a crucial role in alleviating the surgical waitlist burden. They target conditions amenable to catheter intervention, such as patent ductus arteriosus (PDA) stenting for duct-dependent conditions, device closure of PDA, device closure of atrial septal defect (ASD), stenting of stenosed pulmonary arteries, and percutaneous valve implantation. By addressing these cases in the catheterization laboratory, we strategically free up valuable OR time for other surgical procedures.

3. Collaborating with primary healthcare facilities: A collaborative approach with primary healthcare facilities has been implemented to assume responsibility for the postoperative care of operated patients. This initiative significantly augments the availability of ICU beds for other patients, optimizing resource utilization and expanding the capacity to accommodate a broader patient population.

In spite of the concomitant expansion of cardiac surgical capacity, the demand for interventions persists, encompassing patients who have survived neonatal surgeries and now require redo surgeries for issues related to the disease or degenerative conduits from prior procedures. Furthermore, there is a growing population of late presenters with previously unrecognized CHDs. The impact of the coronavirus disease (COVID-19) pandemic over the past 2 years has exacerbated our challenges, resulting in a case volume that has remained below 1000 cases per year. This decline has introduced disparities in service delivery, necessitating strategic adaptations to ensure optimal care amidst the changing landscape of patient needs and external factors affecting our operational capacity.

Financial sustainability and funding for paediatric cardiac surgeries

The financial burden associated with cardiac surgeries is substantial, often posing a significant challenge for young parents who may not be able to afford the surgeries. A considerable portion of the financial responsibility falls on the government health budget. However, despite the escalating population growth, the allocation for the government health budget has not kept pace with the increasing demographic demands. In response to this dilemma, the National Heart Institute has established the IJN foundation—a platform where corporate entities and non-governmental organizations can contribute funds to assist in covering the costs of cardiac surgeries for those in need. While this serves as a short-term solution, a more sustainable funding mechanism is imperative to support affected children in the long run.

One viable strategy is the implementation of a National Heart Insurance scheme or the encouragement of private insurance options specifically designed to cover the expenses associated with congenital heart defect surgeries. These measures would provide a more reliable and consistent source of funding to address the financial challenges faced by families in need of such medical interventions.

Quality assurance and improvement

The emphasis on the quality of surgical care has been critical in our institute’s growth as a national referral centre for Malaysia. Recognizing our commitment to excellence, Children’s Heart Link has designated us as a centre of excellence, entrusted with the training of doctors from the region. To further ensure quality improvement and diminish mortality rates associated with CHDs, our institute actively engages in the IQIC data survey since 2013. Through consistent participation, we have benchmarked our performance against similar programmes in other regions, maintaining a level of excellence that aligns with international standards. The IQIC surgical data report has recorded an encouraging improvement in our mortality and reduction in our morbidities. Tables 1 and 2 describe our mortality and morbidities in 2022 as compiled by the IQIC. Figure 1 shows that our in-hospital mortality has been around 2–3% over the years.

Table 1.

Clinical outcome analysed in 2022. iv. Clinical outcomes. Number of patients analysed (n = 694)

	Number	Percent
In-hospital mortality	17	2.5%
Surgical site infection	1	0.1%
Bacterial sepsis	22	3.2%
Any major infection*	23	3.2%
Additional hospital-acquired infection	20	2.9%
Ventilator-associated event (n = 691)	1	0.1%
Catheter-associated bloodstream infection (n = 691)	0	0.0%
Catheter-associated urinary tract infection (n = 691)	1	0.1%

IQIC Surgical Data Report 2022 [7]. https://iqic.chboston.org/Home/Resources

^*Either bacterial sepsis or surgical site infection

Table 2.

Complication observed in 2022

Complications	Number	Percent
Required additional surgery for bleeding (n = 690)	6	0.9%
Reintubation within 24 h of extubation (n = 690)	10	1.5%
ICU readmission after 24 h discharged (n = 689)	1	0.2%
Diaphragmatic paralysis (n = 691)	42	6.1%
Post-surgical heart block requiring a pacemaker (n = 689)	8	1.2%
Tracheostomy during the same admission (n = 691)	0	0.0%
Postoperative seizures (n = 690)	10	1.5%
Acute kidney injury requiring dialysis (n = 690)	17	2.5%
Other complications (n = 688)	264	38.4%

IQIC Surgical Data Report 2022 [7]. https://iqic.chboston.org/Home/Resources

Fig. 1.

In-hospital mortality observed in IJN from 2014 to 2022

In our pursuit of quality improvement, Paediatric and Congenital Heart Centre (PCHC) has implemented process enhancements in our practice by:

• (i)Launching clinical pathways for two of our most frequently performed procedures: the ventricular septal defect (VSD) pathway in 2013 and the tetralogy of Fallot (TOF) pathway in 2020. In the 2023 analysis of the VSD pathway, achieving an enrollment rate of 88%, we surpassed the set target of 80%. Key metrics, such as preoperative stay of less than 3 days (86%), ICU stay of less than 48 h (93%), and total hospital stay of less than a week (89%), exceeded expectations. The same findings were obtained with TOF pathway. Our aim is to increase our target to 100% in the coming year. Targeted interventions are being implemented to improve compliance and reduce morbidities, with the overarching goal of enhancing patient experience and reducing hospitalization costs.
• (ii)Addressing patient waiting times for elective surgery, particularly for complex cases. Presently, the median waiting time from referral to surgery for VSD and TOF is 4 months and 7 months, respectively. However, complex elective surgeries such as the Rastelli operation, right ventricular to pulmonary artery conduit repair (RV to PA), Fontan completion, and redo conduit change have a minimum waiting time of 1 year. At the latest audit, only 50% of complex elective cases underwent surgery within 1 year of referral. Our target is to achieve a waiting time of 6 months for all complex elective cases.

To achieve this target, we have implemented the following process improvements:

1. Establishment of an online surgical scheduling system accessible to surgeons, cardiologists, and secretaries, allowing referring cardiologists to allocate operating dates during clinic consultations. This not only streamlines the scheduling process but also alleviates the workload of secretarial staff.

2. Allocation of dedicated slots for complex elective cases on surgeons’ operating lists.

We anticipate positive outcomes from the forthcoming audit as we strive to reduce patient waiting times for elective surgery and enhance overall patient care.

Cardiothoracic training programme

The maintenance of high-quality care is critical in establishing community trust, bolstering team and hospital staff morale, and this hinges upon the development of a cardiothoracic training programme that ensures the continuous provision of high-caliber cardiac surgical care.

In accordance, the Malaysian Board of Cardiothoracic Surgeons, in collaborations with the Royal College of Surgeons of Edinburgh, has established a structured cardiothoracic training programme that ensures the skills and expertise of our medical professionals. The candidates must undergo a mandatory 6-year training, where they will sit for the Board of Examination at the end of their fifth year. If the candidate wishes to follow the Congenital Heart Surgery track, the candidates will spend their sixth year for overseas training. At the end of their training, the candidates will receive a certificate of completion of training. Since the establishment of the training programme, three batches or 12 candidates have passed the examination and the Fellowship was conferred by the Royal College of Surgeons of Edinburgh. They are awaiting entry into the National Registry of Specialists to become independent surgeons.

One of our primary challenges lies in attracting candidates to pursue congenital heart surgery as their future career path. Currently, trainees express dissatisfaction with the financial remuneration, with many preferring a mixed practice involving both adult and congenital heart surgery. To address this, we propose implementing solutions centred on providing additional incentives. These may include expediting promotion timelines for those specializing in congenital heart surgery, introducing a National Insurance scheme, and elevating the payor status specifically for congenital heart surgery. By adopting these measures, we aim to reduce dependence on philanthropic and humanitarian assistance, thereby fostering a more sustainable and appealing career path in this specialized field.

Future directions and the way forward

The PCHC has been operational for over a decade, marking a significant milestone in our healthcare landscape. Despite our relatively short existence compared to similar centres in high-income countries, our commitment remains unwavering. While our aspiration is to extend services to all Malaysians, challenges persist, with a notable portion of the population experiencing limited access or delays in receiving treatment. Acknowledging these barriers, we continue to explore strategies and partnerships to bridge these gaps, ensuring that our specialized care reaches those in need across the nation.

Early detection—antenatal diagnosis

The latest report “Under 5 mortality –looking into preventable death” [9] from the Ministry of Health Malaysia highlights the significant impact of cardiovascular malformations, constituting 30.4% of such mortalities, which accounted for approximately 8.9% of all under-5 deaths in 2016. Alarmingly, only 12.7% of these cases were detected antenatally, leaving 85.5% undiagnosed before birth. In response to this concerning trend, the Ministry of Health has devised initiatives to enhance antenatal diagnosis. This involves the implementation of routine fetal cardiac screening in obstetrics clinics, followed by detailed scans conducted by cardiologists. Additionally, efforts are underway to strengthen pulse oximetry screening in the neonatal period, aiming to identify cardiac issues early and promptly refer affected infants to tertiary centres for confirmation and treatment. These strategic initiatives are poised to significantly improve early detection and intervention, subsequently reducing morbidities associated with these diseases and enhancing post-surgical outcomes.

Expanding capacities and subspecialization

Addressing the existing disparities in accessibility to cardiac care within Malaysia necessitates concerted efforts, and the Ministry of Health has undertaken various initiatives:

1. Education, training, and accreditation of neonatologist-performed echocardiography

   The implementation of a structured syllabus on neonatal echocardiography and cardiac management is a crucial component of neonatal subspeciality training. This initiative aims to enhance the capabilities of neonatologists, ensuring early detection and management of CHD.

2. Decentralization or regionalization

   Decentralization or regionalization has emerged as a promising strategy to enhance cardiac surgical capabilities in Malaysia. Several government cardiac centres and university hospitals currently house underutilized cardiac programmes, presenting an opportunity for development to accommodate both simple and complex congenital heart operations. These underutilized units can increase capacities in two ways:

   • (i)
     Enhancing existing cardiac units
   • (ii)
     Increase human resources by training additional paediatric cardiac surgeons, cardiologists and nurses in the operating room, ICUs, and perfusionists

By leveraging these resources, the National Heart Institute can assume a central role in training, advising, and handling higher-risk cases. This collaborative approach aims to streamline and expedite the cardiac surgical process, ultimately reducing waiting times for operations.

• 3.
  Expanding subspecialities and mechanical support

  • (i)
    Introducing trachea repair work in IJN: To diversify career paths for future cardiac surgeons, the introduction of trachea repair work in IJN is proposed, expanding beyond the current purview predominantly handled by paediatric surgeons.
  • (ii)
    Other subspecializations: Initiatives to introduce valve repair work, left ventricular rehabilitation, and expanding the limits of extracorporeal membrane oxygenation ECMO support from cardiac to respiratory support aim to create diverse opportunities for aspiring surgeons.
  • (iii)
    Minimally invasive surgery: Learning from regional practices, the goal is to make minimally invasive surgery, particularly for atrial septal defect (ASD) and VSD closure, a routine practice.
• 4.Mechanical support of the heart in the form of LVAD as a bridge to transplant and destination therapy

Implementing mechanical support in the form of left ventricular assist devices (LVAD) serves as both a bridge to heart transplant and a destination therapy, ensuring comprehensive care for patients with advanced heart failure.

National registry and database for Malaysia

The absence of a national registry or shared database in Malaysia’s cardiac care landscape underscores a current reliance on separate systems. Presently, the PCHC utilizes Paeds Care for patient data entry, encompassing demographic information, echocardiography, and cardiac catheterization data. Meanwhile, paediatric cardiac surgeries use hospital-based data for operation notes and care plans, with the two sets of data yet to be integrated into a single database. The plan is to consolidate this information when transitioning to a comprehensive electronic medical records system.

In recognizing the imperative for structured data collection, there is a proposal to establish registries specifically for functionally single ventricular heart, aortopathy, and rheumatic valvular disease within IJN, subsequently expanding these registries to a nationwide database. A robust database would not only enhance internal record-keeping, but also facilitate collaborative studies within Malaysian centres and foster international collaborations.

Efforts to cultivate a culture of compiling, interpreting, and presenting data to international colleagues are crucial. This practice should be instilled in both currently practising surgeons and aspiring young surgeons. By actively engaging in collaborative studies and sharing findings internationally, surgeons can elevate their status as academic practitioners, contributing not only routine services but also valuable insights to the global medical community.

Conclusion

The IJN model, characterized by high-quality cardiac surgery with acceptably low mortality rates, serves as a feasible and replicable blueprint for implementation in low- and middle-income countries. However, addressing the existing disparities in access to cardiac surgery within Malaysia requires a multifaceted approach. This includes a substantial increase in both human and physical resources dedicated to cardiac care. The emphasis on safety, quality, and efficiency should remain central to this expansion, ensuring that the growth in resources translates into improved accessibility without compromising the established standards of excellence.

Funding

None.

Data Availability

The mortality and morbidity data mentioned in this manasucript is accesible from the International Quality Improvement Collaboratives for Congenital Heart Disease (IQIC) survery analysis conducted by the Boston Children's Hospital for our site , The National Heart Insitute Kuala Lumpur.

Declarations

Ethics approval

The Ethics Committee approval is not applicable for this review article.

Informed consent statement

The informed consent is not applicable for this review article.

Statement of human and animal rights

The human and animal rights issue is not applicable for this review article.

Conflict of interest

There is no conflict of interest involved.