Moedas Fernanda, Nunes Filipa, Brito Paula, Bessa Ana, Espírito Santo Sara, Soares Sara, Pereira Marisa, Viana Victor, Peixoto Bruno, Miranda Joana O, Areias José Carlos, Areias Maria Emília G
Department of Social and Behavioral Sciences of the University Institute of Health Sciences-CESPU, 4585-116 Gandra, Portugal.
Department of Pediatric Cardiology, University Hospital Center S. João, 4200-319 Porto, Portugal.
Rev Cardiovasc Med. 2023 Aug 1;24(8):224. doi: 10.31083/j.rcm2408224. eCollection 2023 Aug.
Congenital heart disease (CHD) is a leading cause of childhood morbidity, with an estimated prevalence of 0.8-1%. However, advances in diagnosis and treatment now allow 90% of childhood CHD patients to survive to adulthood, leading to increased interest in their quality of life (QoL). In this study, we examine the impact of clinical and psychosocial variables, including the number of surgical interventions (NSI), age at surgery, school achievement, and social support, as mediating factors of QoL in CHD patients.
The study included 233 CHD patients (132 males) with an average age of 15.2 2.07 years, including 80 with cyanotic CHD and 153 with acyanotic CHD. The severity of illness ranged from mild to severe, with 30 patients having a severe illness, 119 having a moderate illness, and 84 having a mild illness. One-hundred-sixty-three patients underwent surgery. Clinical data on diagnosis, the severity of CHD, the type of CHD, and surgical interventions were collected from patient records, and a semi-structured interview was conducted to explore the relationship between CHD diagnosis and various aspects of life. QoL was assessed using the Abbreviated World Health Organization Quality of Life questionnaire (WHOQOL-Bref) questionnaire.
Ten mediation models were analyzed, each with three hypotheses (paths). In all models the first hypothesis was supported. Analyses of the second and third hypotheses revealed three feasible models of mediation through the effect of NSI on QoL in CHD patients.
Our findings indicate that patients with more severe and cyanotic CHD generally require more surgical interventions, which may increase the risk of negative outcomes and affect patients' perception of QoL. These results have important implications for healthcare providers and psychologists who work with childhood CHD patients.
先天性心脏病（CHD）是儿童发病的主要原因，估计患病率为0.8 - 1%。然而，诊断和治疗方面的进展现在使90%的儿童CHD患者能够存活至成年，这导致人们对其生活质量（QoL）的关注度增加。在本研究中，我们考察了临床和心理社会变量，包括手术干预次数（NSI）、手术年龄、学业成绩和社会支持，作为CHD患者QoL的中介因素的影响。
该研究纳入了233例CHD患者（132例男性），平均年龄为15.2 ± 2.07岁，其中80例为青紫型CHD，153例为非青紫型CHD。疾病严重程度从轻度到重度不等，30例患者病情严重，119例患者病情中度，84例患者病情轻度。163例患者接受了手术。从患者记录中收集了关于诊断、CHD严重程度、CHD类型和手术干预的临床数据，并进行了半结构化访谈以探讨CHD诊断与生活各个方面之间的关系。使用世界卫生组织生活质量简表（WHOQOL - Bref）问卷评估生活质量。
分析了10个中介模型，每个模型有三个假设（路径）。在所有模型中，第一个假设得到支持。对第二个和第三个假设的分析揭示了通过NSI对CHD患者QoL的影响产生的三种可行的中介模型。
我们的研究结果表明，患有更严重和青紫型CHD的患者通常需要更多的手术干预，这可能会增加负面结果的风险并影响患者对QoL的感知。这些结果对与儿童CHD患者合作的医疗保健提供者和心理学家具有重要意义。
