Ruggiero Kristine M, Hickey Patricia A, Leger Robin R, Vessey Judith A, Hayman Laura L
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.
J Spec Pediatr Nurs. 2018 Jan;23(1). doi: 10.1111/jspn.12204. Epub 2017 Dec 20.
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.
了解父母对其子女健康状况的看法很重要，因为父母是儿科环境中医疗保健利用的驱动因素。了解父母对先天性心脏病（CHD）患儿疾病严重程度的认知及其对儿童健康相关生活质量（HRQOL）的影响，对于评估护理结果、改善护理协调以及为推进以家庭为中心的儿科心脏病患者护理政策提供依据至关重要。CHD及其疾病严重程度对儿童HRQOL的影响已有研究，但结果并不一致。本研究的总体目标是检查父母对患有CHD的学龄儿童HRQOL的看法，并比较不同严重程度类别的CHD患者之间的HRQOL。
这是一项描述性相关性研究设计。
共有71名5至12岁学龄儿童的父母完成了儿童生活质量量表4.0通用核心量表（PedsQL）（包括总分、身体健康和心理社会健康总结分数）以及心脏特异性HRQOL量表（PedsQL 3.0）。通过方差分析比较CHD严重程度类别之间的PedsQL分数。
患有CHD的学龄儿童总体HRQOL良好，所有分数在疾病严重程度类别之间存在显著差异。父母报告说，在所有严重程度组中，年龄较大儿童的HRQOL得分低于年龄较小的儿童（p <.01），对于那些患有更严重疾病的儿童也是如此（p <.01）。
基于本研究结果，干预措施应侧重于针对年龄较大的CHD儿童的心理社会健康以及年龄较小的CHD儿童的身体健康。这些信息有助于在照顾CHD儿童时提供实际建议，同时为相关政策提供参考。
