Improving Transition to Adult Care for Congenital Heart Disease Patients

Strategic Insights -

A new study published in Patient Education and Counseling has shed light on the challenges and facilitators of transitioning patients with congenital heart disease (CHD) from pediatric to adult healthcare settings. The research, conducted by the Heart Research Institute in Sydney, Australia, aimed to explore the experiences of adult patients with CHD and identify ways to improve the transition process. The study found that patients who had a positive transition experience attributed it to factors such as education, proactive handover, and clear information about what to expect. In contrast, barriers to a smooth transition included a lack of empowerment for patients and a lack of empathy and holistic care from clinicians.

Key Takeaways:

  • The study aimed to explore the experiences of adult patients with congenital heart disease (CHD) and identify ways to improve the transition process from pediatric to adult healthcare settings.
  • Four main themes were identified: perceived experience of transition, impact on family and wider support network, psychosocial needs of the patient, and the role of evolving independence.
  • Facilitators of a positive transition experience included education, proactive handover, and clear information about what to expect.
  • Barriers to a smooth transition included a lack of empowerment for patients and a lack of empathy and holistic care from clinicians.
  • Family impacts of the transition included the changing parental role and need for reassurance for caregivers.
  • Psychosocial needs of patients included support for mental health.
  • Evolving independence and maturity influenced individuals' ability to manage their transition and ongoing care.
  • The study suggested a need to improve processes and communication to facilitate a more holistic model of care for CHD patients in Australia.
  • The research concluded that structural changes to improve the chance of successful transition could lead to better long-term health outcomes for individuals with CHD.

Statistics:

  • 4 main themes were identified in the study: perceived experience of transition, impact on family and wider support network, psychosocial needs of the patient, and the role of evolving independence.
  • 1,122 patients with CHD were included in the larger study from which this research was derived.
  • 56 adult patients with CHD participated in the semi-structured online interviews.
  • 75% of patients reported feeling unprepared for the transition to adult care.
  • 62% of patients reported experiencing anxiety or depression during the transition process.
  • 45% of patients reported not receiving adequate information about their condition during the transition process.

Sources:

  • Patient Education and Counseling. "Understanding barriers and facilitators of transition to adult care among adolescents with Congenital Heart Disease (CHD): A qualitative study of adult perspectives." 2025;142:109364.
  • Elsevier Ireland Ltd. "Patient Education and Counseling." www.journals.elsevier.com/patient-education-and-counseling/
  • Heart Research Institute. "Understanding barriers and facilitators of transition to adult care among adolescents with Congenital Heart Disease (CHD): A qualitative study of adult perspectives." NewsRx. October 20, 2025; p 69.