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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Article info
Publication history
Published online: August 22, 2019
Accepted:
August 1,
2019
Received:
June 1,
2019
Footnotes
See page 1649 for disclosure information.
Identification
Copyright
© 2019 Canadian Cardiovascular Society. Published by Elsevier Inc. All rights reserved.
