Study Highlights

• To ensure ongoing medical and psychosocial success, transfer of care requires developing health care transition skills and gaining independence in managing one's own health care.
• Examples of self-management skills relevant to chronic disease management include making appointments, taking medications independent of parent/guardian, refilling prescriptions, attending part of appointments alone, and calling the provider about health changes.
• Examples of self-advocacy skills relevant to chronic disease management include keeping an appointment calendar, preparing questions before the appointment, ensuring that the questions are answered, answering the clinician's questions, and using community support services as needed.
• A recent meta-analysis showed that a key intervention for patients with CHD would be routine social determinants of health (SDOH) screening, with appropriate services referrals for those who screen positive.
• For example, systemic inequities leading to racial and ethnic disparities, economic instability, and limited education and employment opportunities all contribute to lapses in CHD care, suboptimal longer-term outcomes and unnecessary morbidity and mortality.
• Impaired psychosocial functioning and neurocognitive deficits, which are common in patients with CHD, may be barriers to successful transition.
• During transition to adulthood, adolescents with CHD may experience psychosocial challenges regarding identity formation, personality development, resilience, peer support, and psychological distress.
• The statement updates 3 sections relevant to transition programming.
  • First, specific factors to be considered include SDOH, psychosocial well-being, and neurocognitive status.
  • Second, costs of inadequate transition include public health burden and impairment in individual quality of life. Gaps in recommended care cause higher mortality and morbidity.
  • Third, considerations and suggestions for transition program design include communication platforms, a family-centered approach, and individual models.
• Various models of transitional care include nurse-led, clinic-based education (linked to improvements in patient knowledge), multidisciplinary transition clinic (linked to higher-follow-up rate and quality of life), and a comprehensive transition program including multiple visits with a transition coordinator, an information day for adolescents, and parental guidance, designed to empower adolescents using intervention mapping.
• During the transition period, emergency department use and decentralization of care increase.
• Uninterrupted health care can potentially minimize hospitalizations and promote physical well-being, resulting in better physical and psychosocial quality of life.
• To improve lifelong care of individuals with CHD, organized, multifaceted, collaborative approaches to transition are needed to collect outcomes data.
• A recent literature review showed benefits of transition interventions on psychosocial outcomes including health-related quality of life, disease-related self-management, and transition readiness.
• Understanding the concepts behind transition and transfer and implementing solutions are essential to providing optimal care to adolescents and young adults with CHD.
• This requires broad understanding of patient, health care professional, and system barriers to reduce worsening health disparities for low socioeconomic status and racial and ethnic populations.
• Programs must also develop proactive, consistent, and sustainable approaches to transition, including educational curricula, regular reinforcement of concepts, patient and family engagement, and periodic evaluations of transition.
• Additional prospective research is needed to identify the most effective programs and components.
• A coordinated and comprehensive effort will allow patients with CHD to maintain congenital heart care with a smooth transition and transfer to adult-oriented care.
• Key principles and guidelines for CHD-specific health care transition programs include:
  • Emphasize patient self-management, self-advocacy, and engagement and educate caregivers to encourage patients to assume a primary ownership role with some shared decision-making.
  • Guide patients in building medical knowledge and care coordination skills and caregivers in assuming a more supportive role, emphasizing the rationale for transition while acknowledging their fears and concerns.
  • Acknowledge individual CHD subtypes and accompanying cardiac, noncardiac, and lifestyle (exercise) complexities.
  • Understand patient diversity in neurocognitive development, intellectual disabilities, mental health conditions, 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 transition by recognizing the role of health literacy and SDOH for all families, particularly those with lower socioeconomic status.
  • Educate members of pediatric and adult CHD teams to address transition needs and provide transition education and skills to all patients with CHD, particularly those with neurodevelopmental deficits.