目的:小儿心脏生活质量量表(PCQLI)是一种针对特定疾病的小儿心脏健康相关生活质量(HRQOL)工具,有效,和可推广的。我们旨在证明接受心律失常消融术的儿童的PCQLI反应性,心脏移植,心脏介入前后的瓣膜手术。
方法:来自11个中心的8-18岁儿童心脏病患者,心脏移植,或瓣膜手术入组.患者和家长代理PCQLI总计,在随访前和随访3-12个月时评估疾病影响和心理社会影响子量表评分。手术后由临床医生评估患者的临床状态,并将其分为显着改善/改善和无变化/更差/更差。配对t检验随时间变化。
结果:我们包括195名患者/父母代理人:12.6±3.0岁;中位随访时间6.7(IQR=5.3-8.2)个月;手术组——79(41%)消融,28例(14%)心脏移植,88(45%)瓣膜手术;临床状态-164(84%)显着改善/改善,31(16%)没有变化/更糟/更糟。PCQLI患者和父母代理人总评分在每个干预组中增加(p≤0.013)。在显著改善/改善的组中,所有PCQLI评分均较高(p<0.001),在无差异/更差/更差的组中,PCQLI评分无临床显著性差异。
结论:PCQLI在小儿心脏人群中具有反应性。临床状态改善的患者及其父母代理人报告术后HRQOL增加。临床状态没有改善的患者及其父母代理人报告HRQOL没有变化。PCQLI可用作纵向随访和介入试验的患者报告结果测量,以从患者和父母代理的角度评估HRQOL影响。
重要的是要有生活质量(QOL)措施,这些措施对手术前后的QOL变化敏感,并且对随时间的变化敏感。儿科心脏生活质量量表(PCQLI)是专门为患有心脏病的儿童开发的QOL措施。这项研究评估了PCQLI检测QOL随时间变化的反应性。正在接受异常心律治疗的儿童和青少年的生活质量,心脏移植,和主动脉,肺,或二尖瓣手术在手术前后进行评估。术后临床状况改善的儿童和青少年,和他们的父母,手术后报告了更好的QOL。从心脏角度来看没有改善的患者及其父母报告术后QOL没有变化。PCQLI可用于在心脏手术或医学治疗之前和之后评估QOL,并随时间跟踪QOL。
OBJECTIVE: Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific pediatric cardiac health-related quality of life (HRQOL) instrument that is reliable, valid, and generalizable. We aim to demonstrate PCQLI responsiveness in children undergoing arrhythmia ablation, heart transplantation, and valve surgery before and after cardiac intervention.
METHODS: Pediatric cardiac patients 8-18 years of age from 11 centers undergoing arrhythmia ablation, heart transplantation, or valve surgery were enrolled. Patient and parent-proxy PCQLI Total, Disease Impact and Psychosocial Impact subscale scores were assessed pre- and 3-12 months follow-up. Patient clinical status was assessed by a clinician post-procedure and dichotomized into markedly improved/improved and no change/worse/much worse. Paired t-tests examined change over time.
RESULTS: We included 195 patient/parent-proxies: 12.6 ± 3.0 years of age; median follow-up time 6.7 (IQR = 5.3-8.2) months; procedural groups - 79 (41%) ablation, 28 (14%) heart transplantation, 88 (45%) valve surgery; clinical status - 164 (84%) markedly improved/improved, 31 (16%) no change/worse/much worse. PCQLI patient and parent-proxies Total scores increased (p ≤ 0.013) in each intervention group. All PCQLI scores were higher (p < 0.001) in the markedly improved/improved group and there were no clinically significant differences in the PCQLI scores in the no difference/worse/much worse group.
CONCLUSIONS: The PCQLI is responsive in the pediatric cardiac population. Patients with improved clinical status and their parent-proxies reported increased HRQOL after the procedure. Patients with no improvement in clinical status and their parent-proxies reported no change in HRQOL. PCQLI may be used as a patient-reported outcome measure for longitudinal follow-up and interventional trials to assess HRQOL impact from patient and parent-proxy perspectives.
It is important to have quality of life (QOL) measures that are sensitive to change in QOL before and after procedures and to be sensitive to change over time. The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a QOL measure specifically developed for children with cardiac disease. This study assessed the responsiveness of the PCQLI to detect change in QOL over time. QOL in Children and adolescents who were being treated for abnormal heart rhythms, heart transplantation, and aortic, pulmonary, or mitral valve surgery were assessed before and after their procedure. Children and adolescents with improved clinical status post-procedure, and their parents, reported better QOL after the procedure. Patients with no improvement from a cardiac standpoint and their parents reported no change in QOL after their procedure. The PCQLI may be used to assess QOL before and after cardiac procedures or medical treatment and follow QOL over time.