Xu Nanfang, Matsumoto Hiroko, Hyman Joshua, Roye Benjamin, Kim Heakyung, Roye David P
Department of Orthopaedics, Peking University Third Hospital, Beijing, China.
Department of Orthopaedic Surgery, Columbia University Medical Center, New York, NY, USA.
Transl Pediatr. 2020 Aug;9(4):507-512. doi: 10.21037/tp-19-176.
Cerebral palsy (CP) is the most common cause of chronic childhood disability. Caregivers often provide prolonged care over patients' life span, thus measuring the impact of the disease and its treatments on caregivers has become a recent focus in research. The current study aims to present an evaluation of the reliability and responsiveness of assessment of caregiver experience with neuromuscular disease (ACEND) following botulinum toxin injection to relieve spasticity in children with CP.
Patients with baseline ACEND scores and at least one assessment following botulinum toxin injection were enrolled. Data on their gender, age, diagnoses, and functional levels (according to The Gross Motor Function Classification System, GMFCS), and ACEND scores were analyzed. Statistical analyses performed included paired -test and linear regression.
Baseline ACEND scores (117.7±47.7) were strongly correlated with follow-up scores (120.4±49.5) with a coefficient of 0.929 (P<0.001), suggesting the high reliability of the questionnaire. Paired-sample t-test revealed an insignificant average improvement in ACEND of 2.7 (P=0.352). The ICD-10 code and the GMFCS level were found to be significant predictors for baseline (P=0.043, P<0.001) and follow-up ACEND scores (P=0.025, P<0.001). Male gender was a significant predictor for improvement in ACEND scores.
We demonstrated the reliability of ACEND through strong correlations of scores before and after botulinum toxin injection. In terms of responsiveness, while the burden of care is largely determined by ICD-10 diagnosis and the GMFCS level, changes in care burden are only related to the gender of the patient and the follow-up time interval.
脑瘫（CP）是儿童慢性残疾最常见的原因。照顾者通常会在患者的整个生命周期内提供长期护理，因此，衡量该疾病及其治疗方法对照顾者的影响已成为近期研究的重点。本研究旨在评估肉毒毒素注射缓解CP患儿痉挛后，照顾者神经肌肉疾病体验评估（ACEND）的可靠性和反应性。
纳入具有ACEND基线评分且在肉毒毒素注射后至少进行过一次评估的患者。分析他们的性别、年龄、诊断、功能水平（根据粗大运动功能分类系统，GMFCS）以及ACEND评分等数据。所进行的统计分析包括配对t检验和线性回归。
ACEND基线评分（117.7±47.7）与随访评分（120.4±49.5）高度相关，相关系数为0.929（P<0.001），表明该问卷具有较高的可靠性。配对样本t检验显示ACEND平均改善不显著，为2.7（P=0.352）。发现ICD-10编码和GMFCS水平是基线（P=0.043，P<0.001）和随访ACEND评分（P=0.025，P<0.001）的显著预测因素。男性是ACEND评分改善的显著预测因素。
通过肉毒毒素注射前后评分的强相关性，我们证明了ACEND的可靠性。在反应性方面，虽然护理负担在很大程度上由ICD-10诊断和GMFCS水平决定，但护理负担的变化仅与患者性别和随访时间间隔有关。
