青少年和年轻成人先天性心脏病的心理社会远期转归

Long term psychosocial outcomes of congenital heart disease in adolescents and young adults

摘要:

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。

Abstract:

OBJECTIVE: Congenital heart disease (CHD) is a chronic illness with a high frequency in the worldwide population, and is normally diagnosed at birth or in uterus. Because of better conditions in diagnosis and early medical and surgical treatment, patients have survival rates of 90% and go further and further in life, facing different challenges in life cycle. In this study, we tested the effects of different demographic, clinical and psychosocial variables on the perception of quality of life (QOL), on psychosocial adjustment (PSA) and psychiatric morbidity (PM) of adolescents and young adults with CHD. We aimed to evaluate QOL, PM and PSA of adolescents and young adults with CHD and to determine which variables (demographic, clinical, and psychosocial) play a role in buffering stress and promoting resilience and which ones have a detrimental effect. METHODS: The study enrolled 150 CHD patients (87 males and 63 females), 12 to 26 years (17.45±3.373 years). The participants were interviewed regarding social support, family educational style, self-image, demographic information and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed self-reports questionnaires for assessment of QOL (WHOQOL-BREF) and PSA (YSR/ASR). ReESULTS: We found a 18.7% lifetime prevalence of psychopathology in our participants (25.4% in females and 13.8% in males). 57.1% had retentions in school (1.53±0.804 year). The perception of QOL of CHD patients is better compared to the Portuguese population in the social relationships, environmental, physical and general dimensions. However, it is worse in female CHD patients and patients with poor academic performance and social support as well as in patients with complex or cyanotic CHD, moderate-to-severe residual lesions and physical limitations, and undergoing surgery. All of these variables, except presence of cyanosis, are also associated to a worse PSA. CONCLUSIONS: Female patients and patients with poor academic performance and poor social support refer worse PSA and QOL.