Ernst Michelle M, Marino Bradley S, Cassedy Amy, Piazza-Waggoner Carrie, Franklin Rodney C, Brown Katherine, Wray Jo
Department of Pediatrics, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA.
Division of Behavioral Medicine, Cincinnati Children's Hospital Medical Center, ML3015, 3333 Burnet Ave, Cincinnati, OH, 45229, USA.
Pediatr Cardiol. 2018 Jan;39(1):79-88. doi: 10.1007/s00246-017-1730-6. Epub 2017 Oct 4.
The purpose of this prospective multi-center cross-sectional study was to identify key biopsychosocial factors that impact quality of life (QOL) of youth with congenital heart disease (CHD). Patient-parent pairs were recruited at a regular hospital follow-up visit. Patient- and parent-proxy-reported QOL were assessed using the Pediatric Cardiac Quality of Life Inventory (PCQLI). Wallander's and Varni's disability-stress coping model guided factor selection, which included disease factors, educational impairment, psychosocial stress, child psychological and parent/family factors. Measures utilized for these factors included the Pediatric Inventory for Parents, Self-Perception Profile for Children/Adolescents, Child Behavior Checklist, Revised Children's Manifest Anxiety Scale, Child PTSD Symptom Scale, State-Trait Anxiety Inventory, and Posttraumatic Diagnostic Scale. Ordinary least squares regression was applied to test the theoretical model, with backwards stepwise elimination process. The models accounted for a substantial amount of variance in QOL (Patient-reported PCQLI R = 0.58, p < 0.001; Parent-proxy-reported PCQLI R = 0.60, p < 0.001). For patient-reported QOL, disease factors, educational impairment, poor self-esteem, anxiety, patient posttraumatic stress, and parent posttraumatic stress were associated with lower QOL. For parent-proxy-report QOL, disease factors, educational impairment, greater parental medical stress, poorer child self-esteem, more child internalizing problems, and parent posttraumatic stress were associated with lower QOL. The results highlight that biopsychosocial factors account for over half the variance in QOL in CHD survivors. Assessing and treating psychological issues in the child and the parent may have a significant positive impact on QOL.
这项前瞻性多中心横断面研究的目的是确定影响先天性心脏病（CHD）青年生活质量（QOL）的关键生物心理社会因素。患者-家长对在医院定期随访时招募。使用儿童心脏生活质量量表（PCQLI）评估患者和家长代理报告的生活质量。Wallander和Varni的残疾-压力应对模型指导因素选择，其中包括疾病因素、教育障碍、心理社会压力、儿童心理因素和家长/家庭因素。用于这些因素的测量工具包括家长版儿童量表、儿童/青少年自我认知量表、儿童行为清单、修订版儿童显性焦虑量表、儿童创伤后应激障碍症状量表、状态-特质焦虑量表和创伤后诊断量表。应用普通最小二乘法回归来检验理论模型，并采用向后逐步剔除过程。这些模型解释了生活质量中相当大比例的方差（患者报告的PCQLI R = 0.58，p < 0.001；家长代理报告的PCQLI R = 0.60，p < 0.001）。对于患者报告的生活质量，疾病因素、教育障碍、自尊低下、焦虑、患者创伤后应激和家长创伤后应激与较低的生活质量相关。对于家长代理报告的生活质量，疾病因素、教育障碍、家长更大的医疗压力、儿童自尊较差、儿童更多的内化问题和家长创伤后应激与较低的生活质量相关。结果表明，生物心理社会因素占CHD幸存者生活质量方差的一半以上。评估和治疗儿童和家长的心理问题可能对生活质量产生显著的积极影响。
