Open Access

ARTICLE

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

Jacqueline S. Lee^1,2, Angelica Blais^1,2, Julia Jackson¹, Bhavika J. Patel¹, Lillian Lai⁴, Gary Goldfield^1,3, Renee Sananes⁵, Patricia E. Longmuir^1,2,3,*

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

* Corresponding Author: Patricia E. Longmuir. Email:

Congenital Heart Disease 2021, 16(3), 255-267. https://doi.org/10.32604/CHD.2021.014628

Received 13 October 2020; Accepted 20 January 2021; Issue published 02 March 2021

Abstract

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).

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