儿童心脏病与父母的情绪健康：一个用于解释儿童和青少年生活质量认知的预测模型。
Childhood heart disease and parental emotional wellbeing: a predictive model to explain the perception of quality of life in children and adolescents.
作者信息
Grimaldi Capitello Teresa, Correale Cinzia, Amodeo Giulia, Balsamo Michela, Carlucci Leonardo, Fiorilli Caterina
机构信息
Child and Adolescent Neuropsychiatry Unit, Bambino Gesù Children's Hospital (IRCCS), Rome, 00146, Italy.
Neurology, Epilepsy and Movement Disorders Unit, Full Member of European Reference Network on Rare and Complex Epilepsies, EpiCARE, Bambino Gesù Children's Hospital (IRCCS), Rome, 00146, Italy.
出版信息
Health Qual Life Outcomes. 2025 Jan 3;23(1):1. doi: 10.1186/s12955-024-02328-w.
BACKGROUND
The number of people living with congenital heart disease (CHD) in 2017 was estimated to be 12 million, which was 19% higher than that in 1990. However, their death rate declined by 35%, emphasizing the importance of monitoring their quality of life due to its impact on several patient outcomes. The main objective of this study is to analyze how parents' psychosocial factors contribute to children's and adolescents' perceptions of their QoL, focusing on their medical condition. More specifically, we explore how parental psychological dimensions, such as anxiety and depression, are related to patients' health-related quality of life (HRQoL).
METHODS
We recruited 447 children aged 5 to 18 years with a CHD diagnosis and their parents (319 mothers and 229 fathers) from January to December 2018. Patients were referred to the Cardiology Department of "Bambino Gesù" Children's Hospital and participated in multidisciplinary standardized follow-up. Children and adolescents were submitted to a comprehensive evaluation by different physicians, including pediatric cardiologists, surgeons, and psychologists, at preset time frames. A series of standardized questionnaires were administered during psychological assessment.
RESULTS
The main findings show a negative correlation between mothers' anxiety and three patients' HRQoL subscales (Treatment II, Treatment anxiety, and Communication). Similarly, mothers' depression correlates negatively with other patients' HRQoL subscales (heart problems, symptoms, perceived physical appearance, cognitive problems, and communication). Fathers' anxiety and depression show negative correlations with only the subscale of Treatment II. More generally, the perceived quality of life of children and adolescents with CHD is influenced by their medical conditions as well as the parents' psychological dimensions.
CONCLUSIONS
Our findings suggest that the caregivers of pediatric patients with CHD are more exposed to psychological problems of anxiety and depression, which affect the perceived quality of life of their children. Longitudinal research with a healthy control group is recommended to further consolidate this evidence.
背景
据估计，2017年先天性心脏病（CHD）患者人数达1200万，比1990年高出19%。然而，其死亡率下降了35%，鉴于生活质量对多个患者预后指标有影响，这凸显了监测其生活质量的重要性。本研究的主要目的是分析父母的心理社会因素如何影响儿童和青少年对自身生活质量的认知，重点关注其病情。更具体地说，我们探讨父母的心理维度，如焦虑和抑郁，与患者的健康相关生活质量（HRQoL）之间的关系。
方法
2018年1月至12月，我们招募了447名年龄在5至18岁、被诊断患有CHD的儿童及其父母（319名母亲和229名父亲）。患者被转诊至“ Bambino Gesù”儿童医院心内科，并参与多学科标准化随访。在预设时间框架内，儿童和青少年接受了包括儿科心脏病专家、外科医生和心理学家在内的不同医生的综合评估。在心理评估期间发放了一系列标准化问卷。
结果
主要研究结果显示，母亲的焦虑与患者的三个HRQoL子量表（治疗II、治疗焦虑和沟通）之间呈负相关。同样，母亲的抑郁与其他患者的HRQoL子量表（心脏问题、症状、感知外貌、认知问题和沟通）呈负相关。父亲的焦虑和抑郁仅与治疗II子量表呈负相关。更普遍地说，患有CHD的儿童和青少年的感知生活质量受其病情以及父母心理维度的影响。
结论
我们的研究结果表明，患有CHD的儿科患者的照顾者更容易出现焦虑和抑郁等心理问题，这会影响其子女的感知生活质量。建议开展有健康对照组的纵向研究，以进一步证实这一证据。
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