Lesch Wiebke, Specht Katharina, Lux Anke, Frey Michael, Utens Elisabeth, Bauer Ulrike
1 Deutsches Herzzentrum Berlin, Competence Network for Congenital Heart Defects, Berlin, Germany.
2 Institute for Biometry and Medical Informatics, Otto-von-Guericke-University Magdeburg, Magdeburg, Germany.
Cardiol Young. 2014 Apr;24(2):321-30. doi: 10.1017/S1047951113000413. Epub 2013 Apr 29.
Persons suffering from congenital heart defects require lifelong specialist medical care. Failure to attend cardiological follow-up examinations and risky health behaviour in the transition phase may cause severe medical complications. A good level of disease-specific knowledge enhances compliance. Therefore, the study's aim was to investigate: (a) the level of disease-specific knowledge, (b) information preferences, and (c) sources of information for children, adolescents, and young adults regarding their illness.
In all, 596 patients, aged 10-30 years, participated in this cross-sectional survey study (response rate: 53%). All patients were already enrolled in the German National Register for Congenital Heart Defects. The main outcome measures included disease-specific knowledge, information preferences, and information sources regarding patients' individual cardiac condition. The patients demonstrated a major knowledge gap concerning their illness and how to live with it. For all three age groups, patients' information needs were unmet on nearly half of the topics of interest. Children's information needs were comparable to those of adolescents and adults concerning several important topics, for example, work/career, sports. Information preferences varied according to age and gender, rather than disease severity. The most important sources of information were physicians (71.0%), family and friends (58.2%), and the Internet (37.5%).
The study revealed substantial knowledge gaps, indicating a need for structured multidisciplinary patient education interventions. These interventions should start as early as in childhood and help patients manage their condition and assume responsibility for their own health, so that the transition phase runs smoothly.
患有先天性心脏缺陷的患者需要终身接受专科医疗护理。在过渡阶段未能参加心脏科随访检查以及危险的健康行为可能会导致严重的医疗并发症。良好的疾病相关知识水平可提高依从性。因此，本研究的目的是调查：（a）疾病相关知识水平，（b）信息偏好，以及（c）儿童、青少年和年轻人关于其疾病的信息来源。
共有596名年龄在10至30岁之间的患者参与了这项横断面调查研究（应答率：53%）。所有患者均已登记在德国先天性心脏缺陷国家登记册中。主要结局指标包括疾病相关知识、信息偏好以及关于患者个体心脏状况的信息来源。患者在其疾病以及如何与之共处方面存在重大知识缺口。对于所有三个年龄组，在近一半的感兴趣主题上，患者的信息需求未得到满足。在几个重要主题上，例如工作/职业、运动，儿童的信息需求与青少年和成年人相当。信息偏好因年龄和性别而异，而非疾病严重程度。最重要的信息来源是医生（71.0%）、家人和朋友（58.2%）以及互联网（37.5%）。
该研究揭示了大量知识缺口，表明需要开展结构化的多学科患者教育干预措施。这些干预措施应尽早从儿童期开始，帮助患者管理病情并对自身健康负责，以便过渡阶段顺利进行。
