Multistakeholder Recommendations for Supporting Patients and Families Transitioning From Paediatric to Adult Congenital Heart Disease Care

• Published in: CJC pediatric and congenital heart disease 2023-10, Vol.2 (5), p.225-236
• Main Authors: Hyde, Emily K., Schultz, Annette S.H., Ducas, Robin, Soni, Reeni, Bekkering, Holly, Barker, Dawn, Klippenstein, Andrea, Dave, Mudra G., Frechette, Chloe, St. Goddard-Frechette, Joanne, Lester, Lori, Mclarty, Shelly, Chudyk, Anna M.
• Format: Article
• Language: English
• ISSN: 2772-8129; 2772-8129
• DOI: 10.1016/j.cjcpc.2023.08.001

Transitioning from paediatric to adult congenital heart disease (CHD) care is a high-risk time for being lost to follow-up. Existing CHD transition programmes have not included patients, caregivers, and health care providers as partners in their development. This study aimed to develop recommendations for a CHD transition programme driven by lived and clinical experiences. We used a multilevel participatory process that engaged adult and paediatric people living with CHD, their caregivers, and CHD health care providers as members of the research team. We also consulted members of these stakeholder groups through a series of 3 virtual workshops that culminated in the generation of recommendations for the essential components of a CHD transition programme. The Transition Essentials recommendations inform what information, education, or support is required, who should provide it, and when and how it should be provided. Information, education, and support for self-management and knowledge are required for people living with CHD. Caregivers require information, education, and support to build capacity in people living with CHD and navigate their new role in their loved ones’ life. The health care team should provide this information, education, and support with peer support options when people living with CHD are 15-22 years of age. This information, education, and support should be individualized, navigate limitations, build over time, have multimodal options, and be available virtually or in person. Engaging those with lived and clinical expertise to develop recommendations for the essential components of a CHD transition programme provides important insights missing from previous studies. La transition des personnes qui vivent avec une cardiopathie congénitale (CC) entre les soins pédiatriques et les soins destinés aux adultes constitue une période où le risque de perte de vue est élevé. Les programmes de transition existants n’ont pas été élaborés avec la participation des patients, des aidants ou des fournisseurs de soins de santé. La présente étude visait à mettre en place des recommandations fondées sur la réalité des personnes concernées et sur l’expérience clinique pour les programmes de transition en contexte de CC. Nous avons fait appel à un processus participatif à plusieurs niveaux dans lequel des enfants et des adultes vivant avec la CC, des aidants et des fournisseurs de soins de santé du domaine de la CC ont été impliqués comme membres de l’équi