Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

Abstract

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.

Health Equity and Policy Considerations for Pediatric and Adult Congenital Heart Disease Care among Minoritized Populations in the United States

“…It is essential to delineate inequities in the transition of pediatric to adult CHD care, as this is the highest risk period for falling out of care, and lapses in care are predictors for increased morbidity and poor long-term CHD outcomes, particularly for minority populations. SDOH, such as poverty, lack of private insurance, difficulties in housing, low level of parental education, being an immigrant, being a minoritized population, shortage of food supply, and transportation barriers, are linked to several adverse clinical outcomes, including missed appointments and loss to follow-up [110,111]. Fewer than 30% of adolescents with CHD successfully transition to adult care; this percentage is even lower for minority and lower-socioeconomic-status populations [112].…”

The Transition of Children Living With Congenital Heart Disease to Adult Care

“…They should be encouraged to seek ACHD care even if it takes long travel so that they can consult the specialists occasionally and stay updated on their condition. Thus, even if ideal conditions for transition and continuity of care are unavailable in the region, the child and parent must be encouraged to receive a comprehensive group through telehealth, collaboration with local healthcare physicians, support networks, regular monitoring, advocacy, and self-management [ 22 ].…”

Effects of transition programs to adulthood for adolescents and young adults with congenital heart disease: a systematic review with meta-analysis

“…A recent systematic review identified structured transition programs led by nurses and formal handovers to ACHD care as strategies to decrease treatment discontinuation in CHD patients. 51 The transition programs evaluated for loss to follow-up in this study employed structured transition programs, which included guidelines from Got Transition©, EMR-based transition planning tools, and shared patient information among healthcare providers. These programs were primarily nurse-led or included nurses as part of the transition team.…”