David Harrison1, Michelle Gurvitz1, Sunkyung Yu2, Ray E Lowery2, Katherine Afton2, Angela Yetman3, Jonathan Cramer3, Nancy Rudd4, Scott Cohen5, Russell Gongwer1, Karen Uzark2. 1. Department of Cardiology, Boston Children's Hospital, Boston, MA, USA. 2. Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children's Hospital, Ann Arbor, MI, USA. 3. Department of Pediatric Cardiology, Children's Hospital & Medical Ctr, Omaha, NE, USA. 4. Department of Pediatrics, Children's Hospital of Wisconsin, Milwaukee, WI, USA. 5. Department of Internal Medicine and Department of Pediatrics, Children's Hospital of Wisconsin, Milwaukee, WI, USA.
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.
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.
Authors: Michael J Goldfarb; Christine Bechtel; Quinn Capers; Ann de Velasco; John A Dodson; Jamie L Jackson; Lisa Kitko; Ileana L Piña; Erin Rayner-Hartley; Nanette K Wenger; Martha Gulati Journal: J Am Heart Assoc Date: 2022-04-21 Impact factor: 6.106