Key result
Congenital heart disease transition to adult care sees ~26% of patients lost to follow-up worldwide.
Why the study?
Patients with congenital heart disease often experience loss of follow-up during the vulnerable transition from paediatric to adult care, leading to increased morbidity and mortality.
Systematic Review
More than a quarter of congenital heart disease patients are lost to follow-up during transition to adult care, highlighting the critical need for structured transition programs.
Answers are grounded in this paper and cite their sources.
High loss to follow-up during transition may warrant structured programs; extends global data on regional disparities and effective strategies.
The majority of patients born with congenital heart disease (CHD) need lifelong surveillance with serial clinical attendance and examinations. However, loss of follow-up (namely no documented follow-up for 3 years or more) is a recognised common problem since it is often related to remarkable worsening in the health of CHD patients with increased morbidity and mortality. Transitioning from paediatric to adult care has proven to be the most vulnerable point in the care of these subjects. As such, a systematic review was carried out to ask the following questions: What is the percentage of loss of follow-up worldwide? Are there regional fluctuations in the percentage? Is there a link between loss of follow-up and the complexity of CHD? What strategies should be employed to lower the risk of discontinuity in care? The most recent worldwide averaged loss of follow-up is 26.1%, with significant fluctuations across continents and countries. This percentage is even higher (31.9%) when one includes all untraceable patients, presuming that they are not having any cardiac follow-up. The highest discontinuity of care was reported in the USA and in patients with simple CHD. Planning the rules of transition seems to be one of the most reliable tools to minimise the number of CHD patients who are lost in transition. Recalling patients, with general practitioners who are crucial in readdressing half of the lost to follow-up CHD patients to adult CHD specialists, and a good relationship between paediatric cardiologists and the adult CHD team are two other valuable strategies in aiding successful transition.
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Bassareo et al. (2023) conducted a systematic review in Congenital heart disease. Transition from paediatric to adult care was evaluated on Worldwide averaged percentage of loss of follow-up. The worldwide averaged loss of follow-up during transition from paediatric to adult care in congenital heart disease patients is 26.1%, rising to 31.9% when including untraceable patients.
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