Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
Clinician Investigator Program, McMaster University, Hamilton, ON, Canada.
Dev Med Child Neurol. 2018 Jun;60(6):587-595. doi: 10.1111/dmcn.13684. Epub 2018 Feb 16.
To develop and validate a disease-specific parent proxy and child quality of life (QoL) measure for patients aged 2 to 18 years surviving cerebral sinovenous thrombosis (CSVT) and arterial ischaemic stroke (AIS).
Utilizing qualitative and quantitative methods, we developed a 75-item Pediatric Stroke Quality of Life Measure (PSQLM) questionnaire. We mailed the PSQLM and a standardized generic QoL measure, Pediatric Quality of Life Inventory (PedsQL), to 353 families. Stroke type, age at stroke, and neurological outcome on the Pediatric Stroke Outcome Measure were documented. We calculated the internal consistency, validity, and reliability of the PSQLM.
The response rate was 29%, yielding a sample of 101 patients (mean age 9y 9mo [SD 4.30]; 69 AIS [68.3%], 32 CSVT [31.7%]). The internal consistency of the PSQLM was high (Cronbach's α=0.94-0.97). Construct validity for the PSQLM was moderately strong (r=0.3-0.4; p<0.003) and, as expected, correlation with the PedsQL was moderate, suggesting the PSQLM operationalizes QoL distinct from the PedsQL. Test-retest reliability at 2 weeks was very good (intraclass correlation coefficient [ICC] 0.85-0.95; 95% confidence interval 0.83-0.97) and good agreement was established between parent and child report (ICC 0.63-0.76).
The PSQLM demonstrates sound psychometric properties. Further research will seek to increase its clinical utility by reducing length and establishing responsiveness for descriptive and longitudinal evaluative assessment.
A pediatric stroke-specific quality of life (QoL) measurement tool for assessments based on perceptions of importance and satisfaction. Moderate-to-high reliability and validity established for a new clinical scale evaluating QoL among children with stroke. Perceived QoL measured using the Pediatric Stroke Quality of Life Measure appears lower in children with neurological impairment.
为 2 至 18 岁患有脑静脉窦血栓形成（CSVT）和动脉缺血性脑卒中（AIS）的患者开发并验证一种特定疾病的父母代理和儿童生活质量（QoL）测量工具。
利用定性和定量方法，我们开发了一个包含 75 个项目的儿科脑卒中生活质量测量工具（PSQLM）问卷。我们向 353 个家庭邮寄了 PSQLM 和标准化通用 QoL 测量工具儿童生活质量问卷（PedsQL）。记录了脑卒中类型、脑卒中年龄和儿科脑卒中结局量表上的神经功能结局。我们计算了 PSQLM 的内部一致性、有效性和可靠性。
回复率为 29%，产生了 101 名患者的样本（平均年龄 9 岁 9 个月[SD 4.30]；69 例 AIS[68.3%]，32 例 CSVT[31.7%]）。PSQLM 的内部一致性很高（Cronbach's α=0.94-0.97）。PSQLM 的结构效度适度强（r=0.3-0.4；p<0.003），与 PedsQL 的相关性适中，表明 PSQLM 操作化的 QoL 与 PedsQL 不同。2 周时的重测信度非常好（组内相关系数[ICC]0.85-0.95；95%置信区间 0.83-0.97），并且建立了父母和儿童报告之间的良好一致性（ICC 0.63-0.76）。
PSQLM 具有良好的心理测量学特性。进一步的研究将通过减少长度并建立用于描述性和纵向评估的反应性来提高其临床实用性。
一种用于基于重要性和满意度感知的儿科脑卒中特定生活质量（QoL）测量工具。为评估儿童脑卒中患者 QoL 的新临床量表建立了中高度可靠性和有效性。使用儿科脑卒中生活质量量表测量的感知 QoL 在神经功能受损的儿童中较低。
