Coelho Rosália, Teixeira Flávio, Silva Ana Margarida, Vaz Cláudia, Vieira Daniela, Proença Cidália, Moura Cláudia, Viana Victor, Areias José Carlos, Areias Maria Emília Guimarães
Departamento de Psicologia, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal; UNIPSA/CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal.
Rev Port Cardiol. 2013 Sep;32(9):657-64. doi: 10.1016/j.repc.2013.07.001. Epub 2013 Sep 7.
We aimed to study the psychosocial adjustment (PSA), psychiatric morbidity and quality of life of adolescents and young adults with congenital heart disease (CHD) to determine which demographic and clinical variables negatively affect adjustment and which increase resilience.
The study included 74 patients with CHD, 41 male and 33 female, aged between 12 and 26 years (mean 18.76±3.86). Demographic information and a complete clinical history were obtained. The participants were interviewed regarding social support, family environment, self-image and physical limitations. A standardized psychiatric interview was conducted, and self-report questionnaires were administered for assessment of PSA (Youth Self Report and Adult Self Report) and quality of life (World Health Organization Quality of Life - Short Version). A caregiver completed an observational version of the PSA questionnaire (Child Behavior Checklist or Adult Behavior Checklist).
Female participants showed more feelings of anxiety and depression (U=952.500; p=0.003), thought problems (U=929.500; p=0.005) and aggressive behavior (U=999.000; p=0.000). They also showed a higher rate of psychopathology. Patients with complex forms of CHD reported more thought problems (U=442.000; p=0.027) and internalization (U=429.000; p=0.021). Compared to the Portuguese population as a whole, participants showed better quality of life in the domains of social relationships (t=2.333; p=0.022) and environment (t=3.754; p=0.000). Patients who had undergone surgery had worse quality of life in physical terms (t=-1.989; p=0.050), social relationships (t=-2.012; p=0.048) and general quality of life (U=563.000; p=0.037), compared to those who were not operated. Better social support was associated with better quality of life in physical terms (t=3.287; p=0.002) and social relationships (t=3.669; p=0.000). Better school performance was also associated with better overall quality of life (U=457.000; p=0.046), less withdrawn behavior (U=812.500; p=0.031), fewer feelings of anxiety and depression (U=854.000; p=0.009), fewer attention problems (U=903.500; p=0.001), and lower scores for internalization (U=817.000; p=0.029) and externalization (U=803.500; p=0.042). Physical limitations had a detrimental effect on quality of life (U=947.500; p=0.001).
Female participants were more prone to worse psychological adjustment and to psychopathology. Patients with complex forms of CHD showed worse PSA, as they need regular care, which restricts social contact with peers and family and integration in school and leisure activities. Patients who had undergone surgery showed worse quality of life as they often have long hospital stays, during which social activities are restricted, making it more difficult for them to develop a good social support network. They require close medical care, and the restrictions on their activities may be life-limiting. Their sense of survival may also be threatened.
Patients with CHD appear to be more prone to psychopathology and female patients are more likely to show worse PSA. Social support was shown to play a crucial role in buffering stress and promoting patients' adjustment.
我们旨在研究先天性心脏病（CHD）青少年和青年的心理社会适应（PSA）、精神疾病发病率和生活质量，以确定哪些人口统计学和临床变量对适应产生负面影响，哪些变量可增强恢复力。
该研究纳入了74例CHD患者，其中男性41例，女性33例，年龄在12至26岁之间（平均18.76±3.86岁）。获取了人口统计学信息和完整的临床病史。就社会支持、家庭环境、自我形象和身体限制对参与者进行了访谈。进行了标准化的精神科访谈，并使用自我报告问卷评估PSA（青少年自我报告和成人自我报告）和生活质量（世界卫生组织生活质量简表）。照顾者完成了PSA问卷的观察版（儿童行为检查表或成人行为检查表）。
女性参与者表现出更多的焦虑和抑郁情绪（U=952.500；p=0.003）、思维问题（U=929.500；p=0.005）和攻击性行为（U=999.000；p=0.000）。她们还表现出更高的精神病理学发生率。患有复杂形式CHD的患者报告有更多的思维问题（U=442.000；p=0.027）和内化问题（U=429.000；p=0.021）。与葡萄牙总体人群相比，参与者在社会关系领域（t=2.333；p=0.022）和环境领域（t=3.754；p=0.000）的生活质量更好。与未接受手术的患者相比，接受过手术的患者在身体方面（t=-1.989；p=0.050）、社会关系方面（t=-2.012；p=0.048）和总体生活质量方面（U=563.000；p=0.037）更差。更好的社会支持与身体方面（t=3.287；p=0.002）和社会关系方面（t=3.669；p=0.000）更好的生活质量相关。更好的学业成绩也与更好的总体生活质量（U=457.000；p=0.
