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脑瘫儿童 TNO-AZL 学前儿童生活质量量表的反应度和最小临床重要差异。

Responsiveness and minimal clinically important difference of TNO-AZL Preschool Children Quality of Life in children with cerebral palsy.

机构信息

Department of Physical Medicine and Rehabilitation, Chang Gung Memorial Hospital, Linkou, 5 Fu-Hsing St. Kwei-Shan, Tao-Yuan, 333, Taiwan.

Graduate Institute of Early Intervention, College of Medicine, Chang Gung University, 259 Wen-Hwa 1st Rd, Kwei-Shan, Tao-Yuan, 333, Taiwan.

出版信息

Qual Life Res. 2020 Mar;29(3):825-831. doi: 10.1007/s11136-019-02370-y. Epub 2019 Nov 28.

Abstract

PURPOSE

To examine the responsiveness and minimal clinically important difference (MCID) of the TNO-AZL (Netherlands Organization for Applied Scientific Research Academic Medical Centre) Preschool Children Quality of Life (TAPQOL) in children with cerebral palsy (CP).

METHODS

Ninety-seven children with CP (60 males, 37 females; aged 1-6 years) and their caregivers were recruited from the rehabilitation programs of Chang Gung Memorial Hospital in Taiwan for this 6-month longitudinal follow-up study. The Functional Independence Measure for Children (WeeFIM) and TAPQOL outcomes were measured at baseline and at a 6-month follow-up. Responsiveness was examined using the standardized response mean (SRM). The distribution-based and anchor-based MCID were determined. The TAPQOL outcomes include physical functioning (PF), social functioning (SF), cognitive functioning (CF), and emotional functioning (EF) domains.

RESULTS

The responsiveness of the TAPQOL for all of TAPQOL domains was marked (SRM = 1.12-1.54). The anchor-based MCIDs of TAPQOL for PF, SF, CF, EF, and total domains were 1.25, 3.28, 2.93, 2.25, and 1.73, respectively, which were similar to the distribution-based MCID values of TAPQOL, except in the PF domain. The distribution-based MCIDs of TAPQOL in various domains were 2.85-3.73 when effect size (ES) was 0.2, 7.13-9.32 when ES was 0.5, and 11.40-14.91 when ES was 0.8.

CONCLUSIONS

TAPQOL is markedly responsive to detect change in children with CP. The caregivers perceived the minimally important change in HRQOL of their children at a relatively low treatment efficacy. Researchers and clinicians can utilize TAPQOL data to determine whether changes in TAPQOL scores indicate clinically meaningful effects post-treatment and at the follow-up.

摘要

目的

考察脑瘫儿童 TNO-AZL(荷兰应用科学研究组织学术医学中心)学前儿童生活质量(TAPQOL)的反应能力和最小临床重要差异(MCID)。

方法

本研究为 6 个月纵向随访研究,共招募了 97 名来自中国台湾长庚纪念医院康复项目的脑瘫儿童(60 名男性,37 名女性;年龄 1-6 岁)及其照顾者。在基线和 6 个月随访时测量儿童功能独立性评定量表(WeeFIM)和 TAPQOL 结果。使用标准化反应均值(SRM)评估反应能力。确定基于分布和基于锚定的 MCID。TAPQOL 结果包括身体功能(PF)、社会功能(SF)、认知功能(CF)和情绪功能(EF)领域。

结果

TAPQOL 所有领域的反应能力都很显著(SRM=1.12-1.54)。TAPQOL 的基于锚定的 MCID 值分别为 PF、SF、CF、EF 和总分的 1.25、3.28、2.93、2.25 和 1.73,与 TAPQOL 的基于分布的 MCID 值相似,除了 PF 领域。当效应量(ES)为 0.2 时,TAPQOL 各领域的基于分布的 MCID 值为 2.85-3.73,当 ES 为 0.5 时为 7.13-9.32,当 ES 为 0.8 时为 11.40-14.91。

结论

TAPQOL 对脑瘫儿童的变化具有明显的反应能力。照顾者认为,在相对较低的治疗效果下,他们的孩子的 HRQOL 发生了最小的变化。研究人员和临床医生可以利用 TAPQOL 数据来确定 TAPQOL 分数的变化是否表明治疗后和随访时的临床有意义的影响。

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