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Multistakeholder Recommendations for Supporting Patients and Families Transitioning From Paediatric to Adult

Emily K Hyde1, Annette S H Schultz2,3, Robin Ducas4

  • 1Winnipeg Regional Health Authority, Winnipeg, Manitoba, Canada.

CJC Pediatric and Congenital Heart Disease
|November 16, 2023
PubMed

Insights

Developing a congenital heart disease (CHD) transition program with patients, caregivers, and providers ensures essential support. Recommendations focus on individualized, multimodal care for young adults with CHD transitioning to adult services.

Area of Science:

  • Cardiology
  • Patient Care
  • Health Systems

Background:

  • Transitioning from pediatric to adult congenital heart disease (CHD) care poses a high risk of lost follow-up.
  • Current CHD transition programs often lack patient, caregiver, and healthcare provider involvement in their design.
  • This study addresses the need for patient-centered recommendations for CHD transition programs.

Purpose of the Study:

  • To develop evidence-based recommendations for a congenital heart disease (CHD) transition program.
  • To ensure the program is informed by the lived experiences of patients and caregivers, and the clinical expertise of healthcare providers.
  • To improve continuity of care for young adults with CHD.

Main Methods:

  • A multilevel participatory process involving adults and children with CHD, their caregivers, and CHD healthcare providers.
  • Three virtual workshops were conducted with stakeholder groups to generate recommendations.
  • Recommendations were developed based on collective lived and clinical experiences.

Main Results:

  • The developed 'Transition Essentials' recommendations outline necessary information, education, and support for self-management and knowledge for individuals with CHD.
  • Caregivers require support to build capacity in individuals with CHD and navigate their evolving role.
  • The healthcare team should deliver individualized, multimodal, and flexible (virtual/in-person) support, including peer options, for individuals aged 15-22.

Conclusions:

  • Incorporating lived and clinical expertise is crucial for developing effective CHD transition programs.
  • The recommendations provide a framework for essential components of CHD transition care.
  • This collaborative approach offers valuable insights previously absent in CHD transition research.
Abstract

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