1 Department of Psychology, Instituto Superior de Ciências da Saúde do Norte (CESPU), Gandra, Portugal ; 2 CINEICC, Centro de Investigação do Núcleo de Estudos e Intervenção Cognitivo-Comportamental, Universidade de Coimbra, Coimbra, Portugal ; 3 UNIPSA-CICS (CESPU), Unidade de Investigação de Psicologia e Saúde, Gandra, Portugal ; 4 Department of Paediatrics (Cardiology), Hospital São João, Porto Medical School, University of Porto, Portugal ; 5 Faculty of Nutrition, University of Porto, Portugal ; 6 Faculty of Law, University of Porto, Portugal ; 7 Unidade de Investigação Cardiovascular, University of Porto, Portugal.
Transl Pediatr. 2013 Jul;2(3):90-8. doi: 10.3978/j.issn.2224-4336.2013.06.02.
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.
The study enrolled 150 CHD patients (87 males and 63 females), 12 to 26 years (M: 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).
We found an 18.7% lifetime prevalence of psychopathology in our participants (25.4% in females and 13.8% in males). 57.1% had retentions in school (M: 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 complex forms of CHD, in cyanotic patients, in moderate-to-severe residual lesions, in patients submitted to surgery and in patients with physical limitations. All of these variables, except presence of cyanosis, are also associated to a worse PSA. Social Support is very important in improving QOL of patients in all dimensions as well as academic performance.
Female patients and patients with poor academic performance and poor social support refer worse PSA and QOL.
先天性心脏病（CHD）是一种在全球人群中发病率较高的慢性疾病，通常在出生或子宫内即可确诊。由于诊断条件的改善以及早期的医学和外科治疗，患者的生存率达到 90%，他们在生活中会走得越来越远，在生命周期中面临着不同的挑战。在这项研究中，我们测试了不同人口统计学、临床和心理社会变量对生活质量（QOL）感知、心理社会适应（PSA）和青少年和年轻成人 CHD 患者精神病理学（PM）的影响。
评估 CHD 青少年和年轻成人的 QOL、PM 和 PSA，并确定哪些变量（人口统计学、临床和心理社会）在缓冲压力、促进韧性方面发挥作用，哪些变量具有不利影响。
这项研究纳入了 150 名 CHD 患者（87 名男性和 63 名女性），年龄在 12 至 26 岁之间（M：17.45±3.373 岁）。参与者接受了有关社会支持、家庭教育方式、自我形象、人口统计学信息和身体限制的访谈。他们回答了标准化精神病学访谈（SADS-L）中的问题，并完成了生活质量（WHOQOL-BREF）和心理社会适应（YSR/ASR）自我报告问卷。
我们发现参与者中有 18.7%的人有精神病理学病史（女性为 25.4%，男性为 13.8%）。57.1%的人留级（M：1.53±0.804 年）。与葡萄牙人群相比，CHD 患者的生活质量感知在社会关系、环境、身体和总体维度上更好。然而，在复杂的 CHD 形式、紫绀患者、中重度残余病变、接受手术的患者和有身体限制的患者中，情况更糟。除了紫绀的存在外，所有这些变量都与 PSA 恶化有关。社会支持在改善患者在所有维度的生活质量和学业表现方面非常重要。
女性患者和学业表现差、社会支持差的患者心理社会适应和生活质量较差。
