Higher Child-Reported Internalizing and Parent-Reported Externalizing Behaviors were Associated with Decreased Quality of Life among Pediatric Cardiac Patients Independent of Diagnosis:A Cross-Sectional Mixed-Methods Assessment  

作　　者：Jacqueline S.Lee Angelica Blais Julia Jackson Bhavika J.Patel Lillian Lai Gary Goldfield Renee Sananes Patricia E.Longmuir 

机构地区：[1]Children’s Hospital of Eastern Ontario Research Institute,Ottawa,Canada [2]Faculty of Health Science,University of Ottawa,Ottawa,Canada [3]Faculty of Medicine,University of Ottawa,Ottawa,Canada [4]Children’s Hospital of Eastern Ontario,Ottawa,Canada [5]The Hospital for Sick Children,Toronto,Canada

出　　处：《Congenital Heart Disease》2021年第3期255-267,共13页先天性心脏病（英文）

基　　金：Data collection at SickKids was supported by the Cardiovascular Clinical Research Unit;Data collection by Bhavika Patel was supported by the Mach-Gaensslen Foundation of Canadathrough a summer research studentship;Data collection by Julia Jackson was supported by a summer studentship from the CHEO Research Institute;The analyses and manuscript preparation by Jacqueline Lee was supported by a Queen Elizabeth II Scholarship.

摘　　要：Background:Pediatric cardiology patients often experience decreased quality of life(QoL)and higher rates of mental illness,particularly with severe disease,but the relationship between them and comparisons across diagnostic groups are limited.This mixed-methods cross-sectional study assessed the association between QoL anxiety and behavior problems among children with structural heart disease,arrhythmia,or other cardiac diagnoses.Methods:Children(6–14 years,n=76,50%female)and their parents completed measures of QoL(PedsQL),behavior(BASC-2,subset of 19 children)and anxiety(MASC-2,children 8+years).Pearson correlations/regression models examined associations between QoL,behavior and anxiety,controlling for age,sex,diagnosis and condition severity.Student t-tests compared results to published normative values.Semi-structured interviews(15 children,13 parents)examined self-and parent-reported perceptions of the patient’s emotional health.Results:Child reported social QoL(95%CI difference:−11.0,−2.1),emotional well-being(95%CI difference:−12.5,−3.8)and adjustment skills(95%CI difference:−13.9,−3.0)were significantly below published norms(p<0.05).Neither age,sex,nor diagnosis were significantly related to questionnaire responses.Compared to children with mild conditions,child and parent-reported QoL was significantly lower in children with complex conditions(np2≥0.14,p<0.05).Lower QoL was strongly associated with more internalizing problems based on both child(r=−0.78,p<0.001)and parent(r=−0.67,p<0.001)reports.Interview responses suggested emotional distress was attributed to“normal”child problems rather than the child’s cardiac problem.Conclusion:Children with complex cardiac conditions,regardless of diagnosis,had diminished QoL.Using the PedsQL in clinical settings may help identify pediatric cardiology patients experiencing emotional distress(i.e.,anxiety and depression).

关 键 词：Anxiety emotional well-being internalizing behaviors congenital heart defects ARRHYTHMIA CARDIOMYOPATHY 

分 类 号：R54[医药卫生—心血管疾病]