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

• DOI: 10.1017/s1047951120004813
• Publication Date: 2021-01-11T20:38:08Z
• Authors: David Harrison; Michelle Gurvitz; Sunkyung Yu; Ray E. Lowery; Katherine Afton; Angela Yetman; Jonathan Cramer; Nancy Rudd; Scott Cohen; Russell Gongwer; Karen Uzark
• Keywords: Statistic

Abstract Background: Amongst patients with CHD, the time of transition to adulthood is associated lapses in care leading significant morbidity. The purpose this study was identify differences perceptions between parents and teens regard readiness. Methods: Responses were collected from 175 teen–parent pairs via validated CHD Transition Readiness survey an information request checklist. distributed electronic tablet at a routine clinic visit. Results: Parents reported perceived knowledge gap 29.2% (the percentage items which parent believes their teen does not know), compared self-reporting average 25.9% they feel deficient (p = 0.01). Agreement lowest for long-term medical needs, physical activities allowed, insurance, education. In self-management behaviours, agreement slight moderate (weighted κ statistic 0.18 0.51). For self-efficacy, ranged fair 0.16 0.28). Teens more likely than (79% versus 65% requesting least one item) particularly pregnancy/contraception insurance. Conclusion: differ several key regarding knowledge, feelings related management heart disease. Specifically, perceive higher deficit, agree that low.