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Canadian Journal of Cardiology

Transition and Transfer From Pediatric to Adult Congenital Heart Disease Care in Canada: Call For Strategic Implementation

Published:August 22, 2019DOI:https://doi.org/10.1016/j.cjca.2019.08.014

      Abstract

      Dramatic increases in survival to adulthood for persons born with congenital heart disease (CHD) have led rise to a corresponding need to provide age-appropriate and developmentally appropriate care across the lifespan. Health care transition is a multidimensional process that ideally begins in early adolescence in the pediatric setting and continues through young adulthood with input from both pediatric and adult CHD providers. Preparation for transition includes the fostering of adolescents' knowledge of their CHD and of self-management and self-advocacy skills needed for lifelong management of chronic disease. Transfer is the event in time when a patient’s care and ownership of health records is taken over by the adult health care team; this is just one element of the broader transition process. Transfer typically occurs by age 18 throughout much of Canada. Successful transition is a shared responsibility, requiring engaged pediatric and adult providers and partnership with both young adults and their parents, all of whom may struggle with this process. An interdisciplinary approach to transition is recommended, given that health care transition is a complex process that occurs within the broader context of young adults’ lives. This review summarizes existing evidence regarding transition and transfer, offers perspectives from multiple stakeholders, and proposes a transition curriculum of development of CHD education and self-management and self-advocacy skills. Specific recommendations to improve implementation of transition and transfer care within the Canadian context are provided. This review sheds light on the current capacity and challenges of adult CHD providers and proposes directions to move this field forward.

      Résumé

      L’augmentation spectaculaire de la survie jusqu’à l’âge adulte des personnes nées avec une cardiopathie congénitale a entraîné une hausse correspondante de la nécessité d’offrir à ces patients des soins appropriés à leur âge et à leur stade de développement tout au long de leur vie. La transition des soins de santé est un processus multidimensionnel qui commence idéalement au début de l’adolescence dans le contexte pédiatrique et se poursuit durant le passage à l’âge adulte, et auquel participent les dispensateurs de soins spécialisés en cardiopathie congénitale des secteurs des services aux enfants et aux adultes. La préparation en vue de cette transition consiste à éduquer les adolescents à propos de leur cardiopathie congénitale et à les aider à acquérir les compétences nécessaires pour être autonomes et s’autoreprésenter afin d’assurer la prise en charge de leur maladie chronique tout au long de leur vie. Le transfert s’entend du moment où les soins et le dossier de santé du patient sont pris en charge par l’équipe des soins de santé aux adultes; il ne s’agit que d’une étape du processus global de transition. Presque partout au Canada, ce transfert survient habituellement lorsque le patient atteint l’âge de 18 ans. La réussite de la transition est une responsabilité partagée, qui incombe aussi bien aux dispensateurs de soins aux enfants et aux adultes qu’aux jeunes adultes et à leurs parents; tous ces intervenants sont susceptibles d’éprouver des difficultés à l’égard du processus. Nous recommandons l’adoption d’une approche interdisciplinaire, compte tenu du fait que la transition des soins de santé est un processus complexe qui doit s’intégrer au contexte élargi de la vie des jeunes adultes. Nous présentons un résumé des données probantes actuelles sur la transition et le transfert des soins ainsi que les points de vue de différents intervenants, et proposons la mise en œuvre, dans le cadre de la transition, d’un programme d’éducation en matière de cardiopathie congénitale et de perfectionnement des compétences nécessaires aux patients pour être autonomes et s’autoreprésenter. Nous formulons également des recommandations particulières pour améliorer l’exécution de la transition et le transfert des soins dans le contexte canadien. L’article jette la lumière sur les capacités actuelles des dispensateurs de soins aux adultes atteints d’une cardiopathie congénitale et les défis auxquels ils font face, et propose des orientations pour faire avancer les choses.
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