Harrison David J, Uzark Karen, Gauvreau Kimberlee, Yu Sunkyung, Lowery Ray, Yetman Anji T, Cramer Jonathan, Rudd Nancy, Cohen Scott, Gurvitz Michelle
Boston Children's Hospital, Boston, MA, USA.
University of Michigan Mott Children's Hospital, Ann Arbor, MI, USA.
Int J Cardiol Congenit Heart Dis. 2021 Dec 18;7:100311. doi: 10.1016/j.ijcchd.2021.100311. eCollection 2022 Mar.
The 2011 American Heart Association best practices statement on transition for young adults with congenital heart disease (CHD) addresses both medical transfer of care and transition to independent adulthood. The statement specifically includes information regarding both medical and lifestyle issues. The aim of this study is to evaluate medical and lifestyle-related areas of knowledge of teens with CHD to help identify targets for potential intervention.
Multicenter cohort study using a validated transition readiness assessment questionnaire, divided into medical, lifestyle and, for females, pregnancy/family planning knowledge. Results were reported as knowledge deficit, or percentage of items that respondents indicated they did not know. Results: 401 patients were included across four U.S. tertiary care centers (median age 18.7 years, range 14-25). Average perceived medical knowledge deficit was 19%, lifestyle knowledge deficit was 19%, and pregnancy/family planning knowledge deficit was 53%. Despite similar combined scores, females outperformed males in medical knowledge (P = 0.03), while males outperformed females in lifestyle knowledge (P < 0.001). Moderate CHD complexity patients scored highest in medical knowledge, while simple CHD scored lowest (P = 0.01), and CHD complexity did not affect lifestyle scores. Taking cardiac medications or having an IEP, had no effect.
Teens and young adults with CHD exhibit similar overall knowledge between medical and lifestyle factors, but differences exist between males and females in each subcategory. Efforts to improve patient knowledge are needed, particularly for those with simple and complex CHD, and improving information regarding pregnancy and family planning.
2011年美国心脏协会关于先天性心脏病（CHD）青年成人过渡的最佳实践声明涉及医疗护理的交接以及向独立成人期的过渡。该声明特别包括了有关医疗和生活方式问题的信息。本研究的目的是评估患有CHD的青少年在医疗和生活方式相关知识领域的情况，以帮助确定潜在干预的目标。
采用经过验证的过渡准备评估问卷进行多中心队列研究，问卷分为医疗、生活方式以及针对女性的妊娠/计划生育知识。结果以知识缺陷或受访者表示不知道的项目百分比来报告。结果：美国四个三级护理中心共纳入401例患者（中位年龄18.7岁，范围14 - 25岁）。平均感知到的医疗知识缺陷为19%，生活方式知识缺陷为19%，妊娠/计划生育知识缺陷为53%。尽管综合得分相似，但女性在医疗知识方面表现优于男性（P = 0.03），而男性在生活方式知识方面表现优于女性（P < 0.001）。中度CHD复杂程度的患者在医疗知识方面得分最高，而简单CHD得分最低（P = 0.01），CHD复杂程度不影响生活方式得分。服用心脏药物或有个别化教育计划没有影响。
患有CHD的青少年和青年成人在医疗和生活方式因素方面的总体知识相似，但在每个子类别中男性和女性存在差异。需要努力提高患者的知识水平，特别是对于患有简单和复杂CHD的患者，并改善有关妊娠和计划生育的信息。
