Physiotherapy Department, Children's Health Ireland at Crumlin, Dublin, Ireland.
Pediatrics, Trinity College Dublin, Dublin, Ireland.
Pediatr Cardiol. 2021 Aug;42(6):1433-1441. doi: 10.1007/s00246-021-02629-7. Epub 2021 Apr 30.
Extracorporeal Life Support (ECLS) is often considered successful if the child leaves intensive care alive. For the child and family, a major concern is quality of life. Aim of this study is to compare health-related quality of life scores of children following cardiac ECLS to a healthy control group. Cross-sectional prospective study using Pediatric Quality of Life Inventory 4.0 Generic Core Scale questionnaire. Population included consecutive children between two and sixteen years of age who underwent cardiac ECLS from 2005 to 2016 and their parents. Each age groups' mean and standard deviation was analyzed individually with minimal clinically important difference calculated. We then compared the scores to a healthy population group. Cronbach's alpha for reliability was calculated and linear regression assessed for relationships between demographics and quality of life scores. Forty-one (60%) families responded. The ECLS had significantly (statistically and clinically) lower health-related quality of life scores in every domain when compared to the healthy cohort. The lowest mean total score was school functioning for both children (59.79 vs 81.31, p < 0.01) and parents (59.01 vs 78.27, p < 0.01). Parents had excellent reliability (α = 0.93, 0.95 & 0.90) compared to children with reliability improving with increasing age in children. Improvements in the management of pediatric patients following ECLS are required to improve their health-related quality of life. Further research is warranted to explore the physical and psychological effects of cardiac ECLS on pediatric survivors to establish individual healthcare needs and optimize health-related quality of life.
体外生命支持（ECLS）通常被认为是成功的，如果孩子离开重症监护病房时还活着。对于孩子和家庭来说，主要关心的是生活质量。本研究的目的是比较接受心脏 ECLS 的儿童与健康对照组的健康相关生活质量评分。使用儿科生活质量量表 4.0 通用核心量表问卷进行横断面前瞻性研究。研究人群包括 2005 年至 2016 年间接受心脏 ECLS 的 2 至 16 岁连续儿童及其父母。分别分析每个年龄组的平均值和标准差，并计算最小临床重要差异。然后将这些评分与健康人群进行比较。计算了可靠性的克朗巴赫α，并进行线性回归分析，以评估人口统计学因素与生活质量评分之间的关系。41 个（60%）家庭做出了回应。与健康队列相比，ECLS 在每个领域的健康相关生活质量评分都显著（统计学上和临床上）较低。儿童和父母的总得分最低的是学校功能，分别为 59.79 和 59.01（均 p < 0.01）。与儿童相比，父母的可靠性（α=0.93、0.95 和 0.90）非常好，随着儿童年龄的增长，可靠性也会提高。需要改善儿科患者在 ECLS 后的管理，以提高他们的健康相关生活质量。有必要进一步研究，以探讨心脏 ECLS 对儿科幸存者的身体和心理影响，确定个体的医疗保健需求，优化健康相关生活质量。
