Ehmann Anna-Lena, Schütte Emily, Semmler Janina, Berger Felix, Bauer Ulrike M M, Schmitt Katharina, Pfitzer Constanze, Helm Paul C
Department of Congenital Heart Disease-Pediatric Cardiology, Deutsches Herzzentrum der Charité, Augustenburger Platz 1, 13353 Berlin, Germany.
Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Charitéplatz 1, 10117 Berlin, Germany.
J Cardiovasc Dev Dis. 2025 Jun 18;12(6):231. doi: 10.3390/jcdd12060231.
Improved medical treatments have extended survival and life expectancy in adults with congenital heart defects (ACHD), placing greater emphasis on psychosocial health. Up to one-third of ACHD experience anxiety or depression, and half develop a mental illness during their lifetime. While there is solid evidence on the prevalence of mental health, many do not receive psychological, psychotherapeutic, or psychiatric treatment (PST) and the psychological care situation remains understudied. In a nationwide, online cross-sectional survey conducted in Q1 2024, 1486 ACHD aged 18 to 85 (M = 36.84 years; 60.8% female) registered in the German National Register for Congenital Heart Defects (NRCHD) completed self-report questionnaires on sociodemographics, illness identity (Illness Identity Questionnaire), mental well-being, and utilisation of PST. CHD diagnoses were determined in conformity with the International Pediatric and Congenital Cardiac Code (IPCCC) and CHD was classified according to Warnes et al. (simple/moderate/complex). Analyses included chi-square tests, t-tests, and binary logistic regression. Overall, 32.8% of participants reported current and/or previous PST (women 37.5%, men 25.3%). PST utilisation was significantly higher in those with complex (40.2%) compared to moderate (29.6%) and simple CHD (25.3%) (s < 0.01). Primary treatment reasons were mental illness (41.7%) and CHD-related concerns (37.2%). Nearly half of treatments were self-initiated (45.8%) and about one-third were physician-recommended (30.8%). Logistic regression revealed CHD severity as a significant predictor of PST use (s < 0.05), with lower odds for simple (OR = 0.48) and moderate (OR = 0.66) compared to complex CHD when controlling for sex ( < 0.001, OR = 1.87), age ( = 0.022, OR = 1.011), education level (s between 0.060 and 0.780), and net income (s < 0.05). Those receiving PST showed significantly higher maladaptive illness-identity scores (engulfment, rejection) and lower acceptance. Approximately one in three ACHD requires mental health support, particularly those with complex CHD. The CHD itself acts as a key stressor and treatment motivator. Findings underscore the need for integrated care linking cardiological and psychosocial services. Routine screening for psychological distress and low-threshold access to PST-also for patients with simple and moderate CHD-are essential to identify and address mental health needs early.
改善后的医疗治疗方法延长了先天性心脏病成人患者（ACHD）的生存期和预期寿命，从而更加重视心理社会健康。高达三分之一的ACHD患者经历过焦虑或抑郁，半数患者一生中会患上精神疾病。虽然有确凿证据表明心理健康问题普遍存在，但许多患者并未接受心理、心理治疗或精神科治疗（PST），心理护理状况仍未得到充分研究。在2024年第一季度进行的一项全国性在线横断面调查中，1486名年龄在18至85岁（平均年龄M = 36.84岁；女性占60.8%）且登记在德国先天性心脏病国家登记册（NRCHD）中的ACHD患者完成了关于社会人口统计学、疾病认知（疾病认知问卷）、心理健康状况以及PST使用情况的自我报告问卷。根据国际儿科和先天性心脏病编码（IPCCC）确定CHD诊断，并按照沃恩斯等人的分类方法（简单/中度/复杂）对CHD进行分类。分析包括卡方检验、t检验和二元逻辑回归。总体而言，32.8%的参与者报告目前和/或以前接受过PST（女性为37.5%，男性为25.3%）。与中度CHD（29.6%）和简单CHD（25.3%）患者相比，复杂CHD患者（40.2%）的PST使用率显著更高（s < 0.01）。主要治疗原因是精神疾病（41.7%）和与CHD相关的担忧（37.2%）。近一半的治疗是患者自行发起的（45.8%），约三分之一是医生推荐的（30.8%）。逻辑回归显示，CHD严重程度是PST使用的显著预测因素（s < 0.05），在控制性别（< 0.001，OR = 1.87）、年龄（= 0.022，OR = 1.011）、教育水平（s在0.060至0.780之间）和净收入（s < 0.05）后，与复杂CHD相比，简单CHD（OR = 0.48）和中度CHD（OR = 0.66）接受PST的几率较低。接受PST的患者表现出显著更高的适应不良疾病认知得分（被吞没感、排斥感）和更低的接受度。大约三分之一的ACHD患者需要心理健康支持，尤其是复杂CHD患者。CHD本身是一个关键的压力源和治疗动机。研究结果强调了将心脏病学和心理社会服务联系起来的综合护理的必要性。对心理困扰进行常规筛查以及为患者提供低门槛的PST服务——包括简单和中度CHD患者——对于早期识别和解决心理健康需求至关重要。
