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中国循证儿科杂志

中国循证儿科杂志 ›› 2024, Vol. 19 ›› Issue (2): 109-115.DOI: 10.3969/j.issn.1673-5501.2024.02.006

• 论著 • 上一篇    下一篇

先天性心脏病青少年过渡期准备度的横断面调查及影响因素分析

占楚仪1，夏倩2a，荣心怡1，李阳1，叶明2a，顾莺2b，王慧美2a   

  1. 1. 复旦大学
    2. 复旦大学附属儿科医院
    3. 复旦大学附属儿科医院心血管中心
    4. 复旦大学护理学院
  • 收稿日期:2024-05-20 修回日期:2024-06-10 出版日期:2024-04-25 发布日期:2024-04-25
  • 通讯作者: 顾莺，王慧美

A cross-sectional survey and analysis of factors influencing transition readiness in adolescents with congenital heart disease

ZHAN Chuyi1, XIA Qian2a，RONG Xinyi1, LI Yang1, YE Ming2a, GU Ying2b, WANG Huimei2a    

  1. 1 School of Nursing, Fudan University, Shanghai 200032, China; 2 Children's Hospital of Fudan University, Shanghai 201102, China：a. Heart Center & Cardiothoracic Surgery, b. Nursing Department

  • Received:2024-05-20 Revised:2024-06-10 Online:2024-04-25 Published:2024-04-25
  • Contact: GU Ying, email: guying0128@aliyun.com; WANG Huimei,email：huimei_wang@163.com

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摘要： 背景：随着医疗水平提高，越来越多的先天性心脏病（CHD）患儿存活并进入成年。从青春期向成人的过渡期准备度体现了CHD青少年的过渡能力以及对疾病的自我管理能力，目前缺乏我国CHD青少年过渡期准备度的现况数据。 目的：评估CHD青少年的过渡期准备度，了解目前国内CHD青少年向成人医疗过渡的准备现状及过渡能力，并分析过渡期准备度的影响因素，为形成个体化的过渡期护理策略提供依据。 设计：横断面调查。 方法：纳入2018年1月1日至2023年8月31日于复旦大学附属儿科医院心胸外科随访、10~18岁的CHD青少年及其主要照护者，向其发放一般资料调查表、STARx自我管理和过渡准备情况评估量表（简称STARx量表）自评版及父母版、中文版鲁汶先天性心脏病知识问卷（LKQCHD）及一般自我效能感量表（GSES），评估CHD青少年过渡期准备度现状，并采用单因素和线性回归分析其影响因素。 主要结局指标：STARx量表得分。 结果：共发放216份问卷，剔除无效问卷64份，用于分析的问卷152份。STARx量表自评版和父母版总体得分分别为（36.74±7.95）和（36.36±7.70）分，差异无统计学意义（P=0.557）。82.2%（125例）的CHD青少年过渡期准备度得分处于中低水平（＜44分），仅17.8%（27例）的CHD青少年过渡期准备度处于高水平（≥44分）。63.2%（96例）的主要照护者表示更愿意留在儿童医院进行随访。对CHD青少年过渡期准备度得分的影响因素进行线性回归分析，结果显示，CHD青少年疾病知识正确率、年龄、是否独生子女及自我效能水平是影响CHD青少年过渡期准备度的主要因素。CHD青少年年龄越大、CHD疾病知识掌握程度越高、自我效能水平越高以及非独生子女的过渡期准备度水平越高。 结论：国内CHD青少年过渡期准备度中等，主要受CHD青少年疾病知识水平、年龄和自我效能感影响，同时患儿家长对医院转移意愿不强烈。

关键词: 先天性心脏病, 过渡期管理, 过渡期准备, 转至成人科, 青少年

Abstract: Background：With advancements in medical care, more children with congenital heart disease (CHD) are surviving into adulthood. The readiness for transition from adolescence to adulthood reflects CHD adolescents' ability to transition and manage their disease. Currently, there is a lack of data on transition readiness among Chinese CHD adolescents. Objective：To assess the transition readiness of CHD adolescents, understand the current state and transition capabilities of CHD adolescents transitioning to adult care in China, analyze the influencing factors, and provide a basis for developing individualized transition care strategies. Design：Cross-sectional survey. Methods：We included CHD adolescents aged 10-18 years and their primary caregivers who were followed up in the Department of Cardiothoracic Surgery at Children's Hospital of Fudan University from January 1, 2018, to August 31, 2023. The transition readiness of CHD adolescents was assessed by collecting data using a researcher-designed general information questionnaire, Self-Management and Transition Readiness Assessment (STARx) questionnaire (both self-report and parent-report versions), the Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) in Chinese, and the General Self-Efficacy Scale (GSES). Univariate and linear regression analyses were used to identify influencing factors. Main outcome measures：STARx questionnaire score. Results：A total of 216 questionnaires were distributed. After excluding 64 invalid questionnaires, 152 questionnaires were included for analysis. The overall scores of the STARx questionnaire for self-report and parent-report were 36.74±7.95 and 36.36±7.70 respectively, with no significant difference (P=0.557). In total, 82.2% (125 cases) of CHD adolescents had low to moderate transition readiness scores (<44), while only 17.8% (27 cases) had high readiness scores (≥44). Besides, 63.2% (96 cases) of primary caregivers preferred follow-up at a children's hospital. Linear regression analysis of factors influencing transition readiness scores indicated that accurate CHD knowledge, age, one-child family, and self-efficacy level were significant factors. Higher levels of readiness were associated with older age, greater CHD knowledge, higher self-efficacy, and being a non-only child. Conclusion：The transition readiness of CHD adolescents in China is moderate and mainly influenced by their CHD knowledge, age, and self-efficacy. Additionally, caregivers showed a strong preference for continuing care at children's hospitals.

Key words: Congenital heart disease, Transition management, Transition readiness, Transition from pediatric to adult healthcare, Adolescents