Over the last several decades, substantial advances in diagnostic and therapeutic surgical techniques have resulted in increases in survival of patients with congenital heart disease (CHD) in developed countries including the United States. Adolescents and emerging adults are estimated to comprise 15% to 20% of the overall population with CHD.1 Healthcare transition, the process of gaining independence with managing one's medical care, optimally includes transfer of care (the point at which the patient moves from a pediatric to an adult healthcare professional or team), begins in adolescence, and can continue after transfer occurs in emerging adulthood (18-25 years old).2 A major goal of healthcare transition is to maximize functioning across the life course through developmentally appropriate healthcare services that empower patients and their caregivers in the process. As noted in a recently issued statement from the American Heart Association, healthcare transition should be achieved through an organized clinical process with the goals of improving adolescents' knowledge about CHD, supporting self-management and self-advocacy skills, learning to navigate a complex medical system, and coordinating integration into adult-centered care, for both primary and subspecialty care.3 Of note, although it is estimated that more than 1.4 million adults with CHD are living in the United States, less than 30% are currently in subspecialty care.4 John and colleagues,3 in this 2022 American Heart Association statement, highlight some potential barriers to successful healthcare transition and offer insights regarding factors to consider with the aim of increasing numbers of CHD patients who have uninterrupted healthcare from adolescence through adulthood.
Barriers and Considerations for Improving Healthcare Transition
Social determinants of health, the conditions in the environments in which people are born, live, learn, and work, affect health, quality of life, and access to and availability of healthcare across the life course. Racial and ethnic disparities in CHD are well documented and persist for Black and Hispanic patients throughout the life course.5 Black patients with CHD have higher postsurgical mortality than their White counterparts, whereas non-White survivors of CHD (<5 years old) have been shown to be at a significant risk for experiencing a lapse in care as compared with their White counterparts.6 These observed disparities are likely multifactorial and include systemic inequities (insurance coverage), social determinants (access to appropriate care for adults with CHD, employment, social support), and implicit bias (conscious or unconscious racism). Indeed, evidence indicates that social determinants of health, particularly lower socioeconomic status, contribute to lapses in care.7 As noted by John and colleagues3 (2022), opportunity costs including missing work, child care for siblings, and transportation to appointments may be barriers to accessing clinical care. Recently, with the aim of improving access to care, CHD centers have developed satellite community clinics and/or developed partnerships with primary and specialty care professionals to ease access to services for patients with CHD geographically.3
Survivors of CHD, particularly those with complex lesions, are at risk for cognitive deficits and emotional distress with a potential to impact educational attainment and opportunities for employment.8 Relatedly, there is recent evidence suggesting that adults with CHD have high rates of unemployment, particularly among Black individuals.9 John and colleagues3 (2022) suggest that establishing programs that screen for social determinants of health, mitigate opportunity costs, and provide transition education and training on navigating the medical and insurance systems are important considerations designed to improve and optimize care during transition. In addition, emphasis in such programs should be placed on patient and parent/provider education regarding the need for and benefits of long-term care for patients with CHD.
Psychosocial well-being of the patient with CHD and his/her family is an important factor to consider because impaired psychosocial functioning has been observed to be a barrier to optimal care.10 Specifically, during transition to adulthood, adolescents with CHD may experience challenges related to identity formation, resilience, peer support, and psychological distress. Thus, understanding and considering psychosocial developmental processes, including identity formation, a core developmental task for adolescents, is recommended for healthcare professionals who care for adolescents transitioning to adult-centered care.3 In addition to psychosocial functioning of patients with CHD, neurocognitive strengths and limitations of patients and parents/caregivers are important considerations. Both prevalence and severity of neurocognitive deficits have been observed to increase in accordance with CHD complexity with transition experiences and poorer outcomes for adolescents and young adults with neurodevelopmental disorders.11 Of note, although most individuals with CHD will be able to assume self-care management central to optimal health across the life course, the transition needs of those with cognitive impairment remain a viable and important area of future inquiry.3
Key Components of CHD-Specific Healthcare Transition Programs
On the basis of available data and ongoing and emerging research, John and colleagues3 offer recommendations for implementing effective healthcare transition programs for individuals with CHD:
Emphasize patient self-management, self-advocacy, and engagement and educate caregivers to encourage move into a primary ownership role with some shared decision making.
Guide patients in building their medical knowledge and care coordination skills and facilitate caregivers moving into a more supportive role, emphasizing the rationale for transition while acknowledging their fears and concerns.
Acknowledge individual CHD subtypes along with the cardiac, noncardiac, and lifestyle complexities associated with each CHD subtype.
Understand the patient diversity in neurocognitive development, intellectual disabilities, mental health, and comorbidities to provide patient and family psychosocial and educational support from the medical care team.
Emphasize lifelong care, including identifying or knowing how to identify an adult CHD specialist before transfer of care.
Advocate for health equity in the transition by recognizing the role of health literacy and social determinants of health for all families navigating a complex medical system, particularly those with a lower socioeconomic status.
Educate members of pediatric and adult CHD teams to address the transition needs and transition education and skills to all patients with CHD, particularly those who also have neurodevelopmental deficits.
These recommendations apply to healthcare provider interactions with individuals with CHD across healthcare and community-based settings. Clearly, pediatric and adult cardiovascular nurses have important roles in facilitating healthcare transitions across the life course for individuals with CHD.
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