Cincinnati Children's Hospital Medical Center, Department of Pediatrics, 3333 Burnet Ave, MLC 5050, Cincinnati, OH 45229, USA.
Pediatrics. 2010 Sep;126(3):498-508. doi: 10.1542/peds.2009-2973. Epub 2010 Aug 30.
The purpose of this multicenter study was to confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI).
Seven centers recruited pediatric patients (8-18 years of age) with heart disease (HD) and their parents to complete the PCQLI and generic health-related quality of life (Pediatric Quality of Life Inventory [PedsQL]) and non-quality of life (Self-Perception Profile for Children [SPPC]/Self-Perception Profile for Adolescents [SPPA] and Youth Self-Report [YSR]/Child Behavior Checklist [CBCL]) tools. PCQLI construct validity was assessed through correlations of PCQLI scores between patients and parents and with severity of congenital HD, medical care utilization, and PedsQL, SPPC/SPPA, and YSR/CBCL scores. PCQLI test-retest reliability was evaluated.
The study enrolled 1605 patient-parent pairs. Construct validity was substantiated by the association of lower PCQLI scores with Fontan palliation and increased numbers of cardiac operations, hospital admissions, and physician visits (P<.001); moderate to good correlations between patient and parent PCQLI scores (r=0.41-0.61; P<.001); and fair to good correlations between PCQLI total scores and PedsQL total (r=0.70-0.76), SPPC/SPPA global self-worth (r=0.43-0.46), YSR/CBCL total competency (r=0.28-0.37), and syndrome and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-oriented scale (r=-0.58 to -0.30; P<.001) scores. Test-retest reliability correlations were excellent (r=0.78-0.90; P<.001).
PCQLI scores are valid and reliable for children and adolescents with congenital and acquired HD and may be useful for future research and clinical management.
这项多中心研究的目的是确认儿科心脏生活质量量表（PCQLI）的有效性和可靠性。
7 个中心招募了患有心脏病（HD）的儿科患者（8-18 岁）及其父母，让他们完成 PCQLI 以及一般健康相关生活质量量表（儿童生活质量量表[PedsQL]）和非生活质量量表（儿童自我知觉量表[SPPC]/青少年自我知觉量表[SPPA]和青少年自我报告[YSR]/儿童行为检查表[CBCL]）。通过患者和父母之间的 PCQLI 评分相关性以及与先天性 HD 的严重程度、医疗保健利用情况以及 PedsQL、SPPC/SPPA 和 YSR/CBCL 评分的相关性，评估 PCQLI 的结构效度。评估 PCQLI 的重测信度。
该研究共纳入 1605 对患者-父母。PCQLI 评分与 Fontan 姑息治疗以及心脏手术、住院和就诊次数增加呈负相关（P<.001）；患者和父母的 PCQLI 评分之间存在中度至高度相关性（r=0.41-0.61；P<.001）；PCQLI 总分与 PedsQL 总分（r=0.70-0.76）、SPPC/SPPA 整体自我价值（r=0.43-0.46）、YSR/CBCL 总能力（r=0.28-0.37）和综合征及精神疾病诊断与统计手册，第四版为导向的量表（r=-0.58 至-0.30；P<.001）得分呈良好相关性。重测信度相关性极佳（r=0.78-0.90；P<.001）。
PCQLI 评分对先天性和后天性 HD 的儿童和青少年是有效和可靠的，可用于未来的研究和临床管理。
