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J Spec Pediatr Nurs. 2018 Jan;23(1). doi: 10.1111/jspn.12204. Epub 2017 Dec 20.

Parental perceptions of disease-severity and health-related quality of life in school-age children with congenital heart disease.

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Pediatric Nurse Practitioner/ Nurse Scientist, Medical Services, Boston Children's Hospital, Boston, MA, USA; Assistant professor, Department of Nursing, MGH Institute of Health Professions, Boston, MA, USA.
Vice President; Associate Cheif Nurse, Cardiovascular and Critical Care Services, Boston Children's Hospital, Boston, MA, USA.
Professor, Department of Nursing, Salem State University, Salem, MA, USA.
Nurse Scientist, Medical Services, Boston Children's Hospital, Boston, MA, USA; Professor, Department of Nursing, Boston College, Boston, MA, USA.
Professor, Department of of Nursing, University of Massachusetts Boston, Boston, MA, USA.



Understanding parents' perceptions of their child's health status is important as parents are drivers of healthcare utilization in the pediatric setting. Understanding parent-perceived disease-severity and its effects on a child's health-related quality of life (HRQOL) in children with congenital heart disease (CHD) is necessary to evaluate outcomes of care, improve care coordination, and inform policies focused on advancing family-centered care for pediatric cardiac patients. The impact of CHDs and disease-severity on the child's HRQOL has been investigated with inconsistent results. The overall aim of this study was to examine parents' perceptions of HRQOL in their school-age child with CHD, and to compare HRQOL among patients with CHD across severity categories.


This was a descriptive correlational study design.


A total of 71 parents of school-age children aged 5-12 years completed the Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL) (including total, physical health, and psychosocial health summary scores) and cardiac-specific HRQOL Scale (PedsQL 3.0). PedsQL scores among CHD severity categories were compared by analysis of variance.


School-age children with CHDs had an overall good HRQOL with significant differences among disease severity categories for all scores. Parents reported lower scores on their HRQOL of older children compared to younger children across severity groups (p < .01) and for those children with more severe disease (p < .01).


Based on the results of this study, interventions should focus on targeting psychosocial health in older children with CHD and physical health in younger children with CHD. This information is useful in providing practical recommendations in caring for children with CHDs while informing relevant policies.


Pediatric Quality of Life Inventory Scale (PedsQL); care coordination; children with chronic illness; congenital heart disease (CHD); disease-severity; family-centered care; health status; health-related quality of life (HRQOL); parent-proxy report; pediatric


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