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目的先天性心脏病(CHD)是一种在全球范围内高发的慢性疾病,通常在出生时或出生前确诊。由于诊断以及早期药物和手术治疗的条件较好,患者的生存率达到90%,并且生存时间不断延长,面临着生活中的各种挑战。该研究探讨了不同人口统计学、临床和心理社会变量对CHD青少年和年轻成人患者的生活质量(QOL)感知、心理社会适应和精神障碍患病率的影响,评估CHD青少年和年轻成人患者的生活质量、心理社会适应和精神障碍发病率,确定哪些变量(人口统计学、临床和心理社会变量)对缓解压力、促进恢复起到积极作用,哪些变量起到不良作用。方法该研究入组了150名CHD患者(男87例,女63例),年龄12～26岁(平均年龄:17.45±3.373岁)。对参与者进行了关于社会支持、家庭教育方式、自我形象、人口统计信息和生理限制等方面的访谈。他们对标准化精神病学访谈(SADS-L)中的问题进行了回答,并填写了自我报告问卷,以进行生活质量(WHOQOL-BREF)和心理社会适应(YSR/ASR)的评估。结果所有参与者精神障碍的终身患病率为18.7%(女性25.4%,男性13.8%)。57.1%的参与者有过留级(平均1.53±0.804年)。与整体葡萄牙人相比,CHD患者的生活质量感知在社会关系、环境、身体和总体方面较好。而女性、学习成绩差、较少的社会支持、复杂性CHD、紫绀型CHD、中重度残留病灶、接受过手术和有生理限制患者生活质量感知较差。除了紫绀,所有这些变量也会引起较差的心理社会适应。结论女性CHD患者及学习成绩差且获得社会支持少的CHD患者的心理社会适应和生活质量较差。
Purpose Congenital heart disease (CHD) is a chronic disease that is high in the world and is often diagnosed at birth or before birth. Due to better diagnosis and early drug and surgical treatment, the survival rate of patients is 90%, and the survival time continues to extend, facing various challenges in life. The study explored the impact of different demographic, clinical, and psychosocial variables on quality of life (QOL) perception, psychosocial adjustment, and psychiatric disorders in CHD adolescents and young adults, and assessed the lives of CHD adolescents and young adult patients Quality, psychosocial adaptation and the incidence of mental disorders to determine which variables (demographics, clinical and psychosocial variables) play a positive role in relieving stress and promoting recovery and which variables play an adverse role. Methods The study enrolled 150 CHD patients (87 males and 63 females) aged 12 to 26 years (mean age: 17.45 ± 3.373 years). Interviews with participants on social support, family education modalities, self-image, demographic information and physical constraints were conducted. They answered questions in the Standardized Psychiatric Interview (SADS-L) and completed a self-report questionnaire for the assessment of quality of life (WHOQOL-BREF) and psychosocial adjustment (YSR / ASR). Results The lifetime prevalence of mental disorders in all participants was 18.7% (25.4% for women and 13.8% for males). 57.1% of the participants had a grade (an average of 1.53 ± 0.804 years). Compared with the overall Portuguese, the quality of life of patients with CHD perception of social relations, environment, physical and overall better. Women, poor academic performance, less social support, complex CHD, cyanotic CHD, moderate to severe residual disease, poor quality of life in patients with surgery and physical limitations. Apart from cyanosis, all of these variables can also cause poor psychosocial accommodation. Conclusions Female CHD patients and poor CHD patients with poor academic performance and social support have worse psychosocial adjustment and quality of life.