People with congenital heart diseases (CHD) need lifelong care from specially trained heart doctors to manage their illness and watch for heart conditions that can develop later in life.
“Over 60% of CHD patients experience lapses in medical follow-up as they transition into adulthood—an alarming figure that underscores the urgent need for better continuity of care,” according to Dr. Eden Latosa, a noted pediatric cardiologist.
A significant cause of morbidity and mortality in children globally, CHD encompasses a range of heart defects present at birth, affecting the structure and function of the heart. These defects can range in severity from mild abnormalities that require no intervention to complex malformations that necessitate multiple surgeries and lifelong management.
At the 55th Philippine Heart Association-Philippine College of Cardiology (PHA-PCC) Annual Convention and Scientific Meeting, Latosa said that the gap in treatment, which is often overlooked, can lead to severe long-term consequences in heart failure, arrhythmias, endocarditis, increased hospitalization, and even early mortality.”
Benefits of continuity
Latosa underscored the positive outcomes of continuous and individualized care, which include smoother transitions between pediatric and adult services, early detection and treatment of complications, improved condition of patient, and better quality of life.
She said that ongoing personalized care helps patients and their families understand their condition and treatment options more clearly.
This leads to improved adherence to care plans and active life planning.
The hidden dangers of disconnection
According to Latosa, “discontinuity of care, typically occurs during the shift from pediatric specialists to adult care providers.”
This break is characterized by poor communication, lack of coordinated efforts between healthcare professionals, and systemic challenges such as limited access to accredited adult congenital heart disease (ACHD) centers.
Negative impacts include delayed or missed diagnoses, higher risk of medical errors, and reduced patient trust.
Why are CHD Patients vulnerable?
Latosa also highlighted the role of social determinants of health in contributing to discontinuity.
CHD survivors are statistically more likely to have learning disabilities, lower educational attainment, and employment instability.
Many live far from specialized heart centers and struggle with navigating the healthcare system, particularly if financial resources or transportation options are limited.
What needs to be done
Early diagnosis through prenatal screening or newborn examinations is crucial for timely intervention and improved outcomes for CHD patients. Further, advances in diagnostic techniques, surgical procedures, and interventional cardiology have dramatically improved the survival rates and quality of life for children with CHD.
To support a continuous care and smooth shift from pediatric to adult care, experts recommend a structured transition program that provides patients with essential knowledge, skills, and support.
Latosa added that improved patient education and ongoing monitoring help boost adherence and prevent care gaps. Addressing social factors—like healthcare access, insurance, and transport—is also key.
Better coordination between pediatric and adult teams ensures continuity, while individualized care plans tailored to each patient’s needs strengthen long-term outcomes.
Dr. Eden Latosa
