Background 

Adults with congenital heart disease (CHD) are an emerging adult heart disease subset, now outnumbering the pediatric population with CHD.

Objective 

We aimed to gain understanding and knowledge of what adults with CHD perceive as important for self-management and describe these needs across demographic factors, developmental characteristics, lesion severity, and quality of life.

Methods 

We used a descriptive mixed-methods online survey merging 4 instruments: Adult CHD Self-management Experience Questionnaire; Adult CHD Demographic Questionnaire; Adaptive Behavior Assessment System, Third Edition; and Stanford Quality of Life Visual Numeric. Participants with CHD 18 to 30 years of age with initial defect repair before 12 months of age were recruited through support from the Adult Congenital Heart Association, clinic adult CHD support groups, and newspaper advertising. Thematic analysis for short-answer questions, descriptive analysis for demographic data and the visual numeric, and intrument-specific scoring assistant software for the Adaptive Behavior Assessment System were used.

Results 

We received 22 responses from 13 women and 9 men. These individuals represented 15 different heart defect diagnoses, mostly of moderate or complex lesion severity. Most had postsecondary education and were employed. Four prominent themes emerged related to self-management: desire for connectivity—psychological support; a plan for the future—education about health and life expectations; coping needs—skills for mental stress; and access to care—navigation of healthcare systems.

Conclusions 

Future longitudinal research and replication studies with larger samples are needed. Educational materials and targeted interventions that promote self-management benefit the aging adult with CHD population.

中文翻译：

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先天性心脏病成人的自我管理需求。

背景 

患有先天性心脏病(CHD) 的成年人是一个新兴的成人心脏病子集，现在的人数已经超过了患有先天性心脏病的儿科人群。

客观的 

我们旨在了解和了解冠心病成人认为对自我管理很重要的内容，并通过人口统计学因素、发育特征、病变严重程度和生活质量来描述这些需求。

方法 

我们使用了描述性混合方法在线调查，合并了 4 种工具：成人 CHD自我管理经验问卷；成人 CHD 人口调查问卷；适应性行为评估系统，第三版；和斯坦福生活质量视觉数字。通过成人先天性心脏病协会、诊所成人 CHD 支持小组和报纸广告的支持，招募了 18 至 30 岁在 12 个月大之前进行初始缺陷修复的 CHD 参与者。自适应行为评估系统使用简答题的主题分析、人口统计数据和视觉数字的描述性分析以及仪器特定的评分助手软件。

结果 

我们收到了 13 名女性和 9 名男性的 22 份回复。这些个体代表了 15 种不同的心脏缺陷诊断，大部分具有中等或复杂的病变严重程度。大多数人受过高等教育并就业。出现了与自我管理相关的四个突出主题：对连通性的渴望——心理支持；未来计划——关于健康和生活期望的教育；应对需求——心理压力的技巧；和获得护理——医疗保健系统的导航。

结论 

未来需要更大样本的纵向研究和复制研究。促进自我管理的教育材料和有针对性的干预措施使患有 CHD 的老年人受益。