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Differences in perceptions of transition readiness between parents and teens with congenital heart disease: do parents and teens agree?

Published online by Cambridge University Press:  11 January 2021

David Harrison*
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Michelle Gurvitz
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Sunkyung Yu
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Ray E. Lowery
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Katherine Afton
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Angela Yetman
Affiliation:
Department of Pediatric Cardiology, Children’s Hospital & Medical Ctr, Omaha, NE, USA
Jonathan Cramer
Affiliation:
Department of Pediatric Cardiology, Children’s Hospital & Medical Ctr, Omaha, NE, USA
Nancy Rudd
Affiliation:
Department of Pediatrics, Children’s Hospital of Wisconsin, Milwaukee, WI, USA
Scott Cohen
Affiliation:
Department of Internal Medicine and Department of Pediatrics, Children’s Hospital of Wisconsin, Milwaukee, WI, USA
Russell Gongwer
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Karen Uzark
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
*
Author for correspondence: Dr D. Harrison, MD, Boston Children’s Hospital, 300 Longwood Avenue, Boston, BCH 3215, MA, USA. Tel: 617-355-2079; Fax: 617-7386289. E-mail: david.harrison@cardio.chboston.org

Abstract

Background:

Amongst patients with CHD, the time of transition to adulthood is associated with lapses in care leading to significant morbidity. The purpose of this study was to identify differences in perceptions between parents and teens in regard to transition readiness.

Methods:

Responses were collected from 175 teen–parent pairs via the validated CHD Transition Readiness survey and an information request checklist. The survey was distributed via an electronic tablet at a routine clinic visit.

Results:

Parents reported a perceived knowledge gap of 29.2% (the percentage of survey items in which a parent believes their teen does not know), compared to teens self-reporting an average of 25.9% of survey items in which they feel deficient (p = 0.01). Agreement was lowest for long-term medical needs, physical activities allowed, insurance, and education. In regard to self-management behaviours, agreement between parent and teen was slight to moderate (weighted κ statistic = 0.18 to 0.51). For self-efficacy, agreement ranged from slight to fair (weighted κ = 0.16 to 0.28). Teens were more likely to request information than their parents (79% versus 65% requesting at least one item) particularly in regard to pregnancy/contraception and insurance.

Conclusion:

Parents and teens differ in several key perceptions regarding knowledge, behaviours, and feelings related to the management of heart disease. Specifically, parents perceive a higher knowledge deficit, teens perceive higher self-efficacy, and parents and teens agree that self-management is low.

Type
Original Article
Copyright
© The Author(s), 2021. Published by Cambridge University Press

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