Lotan Meir, Zwilling Moti, Romano Alberto
Department of Physiotherapy, Ariel University, Ariel 4070000, Israel.
Israeli Rett Syndrome National Evaluation Team, Ramat Gan 5200100, Israel.
Diagnostics (Basel). 2023 Jun 23;13(13):2148. doi: 10.3390/diagnostics13132148.
(1) Background: One of the characteristics associated with Rett syndrome (RTT) is a fear of movement (FOM). Despite the grave consequences on health, function, and the caregiver's burden associated with bradykinesia accompanying FOM, there is no specific FOM assessment tool for RTT. (2) Objective: To construct and assess the psychometric values of a scale evaluating FOM in RTT (Rett syndrome fear of movement scale-RSFMS). (3) Methods: Twenty-five girls aged 5-33, including a research group (N = 12 individuals with RTT) and control group (N = 13 typically developing girls at equivalent ages). The Pain and Discomfort Scale (PADS) and Facial Action Coding System (FACS) assessed the participants' behavior and facial expressions in rest and movement situations. (4) Results: Significant behavioral differences were recorded in these rest and movement situations within the research groups using the RSFMS ( = 0.003), FACS ( = 0.002) and PADS ( = 0.002). No differences in reactions were found within the control group. The new scale, RSFMS, was found to show a high inter- and intra-rater reliability (r = 0.993, < 0.001; r = 0.958, < 0.001; respectively), good internal consistency (α = 0.77), and high accuracy (94.4%). (5) Conclusions: The new scale for measuring FOM in RTT, the RSFMS, was validated using the FACS and PADS. The RSFMS was found to be a tool that holds excellent psychometric values. The new scale can help clinicians working with individuals with RTT to plan appropriate management strategies for this population.
(1) 背景：与雷特综合征（RTT）相关的特征之一是运动恐惧（FOM）。尽管伴随FOM的运动迟缓对健康、功能以及照料者负担有着严重影响，但目前尚无针对RTT的特定FOM评估工具。(2) 目的：构建并评估用于评估RTT中FOM的量表（雷特综合征运动恐惧量表-RSFMS）的心理测量学价值。(3) 方法：25名年龄在5至33岁的女孩，包括研究组（N = 12名RTT个体）和对照组（N = 13名年龄相当的发育正常女孩）。使用疼痛与不适量表（PADS）和面部动作编码系统（FACS）评估参与者在休息和运动状态下的行为及面部表情。(4) 结果：在研究组中，使用RSFMS（P = 0.003）、FACS（P = 0.002）和PADS（P = 0.002）记录到在这些休息和运动状态下存在显著的行为差异。对照组内未发现反应差异。新量表RSFMS显示出较高的评分者间和评分者内信度（分别为r = 0.993，P < 0.001；r = 0.958，P < 0.001）、良好的内部一致性（α = 0.77）以及较高的准确性（94.4%）。(5) 结论：用于测量RTT中FOM的新量表RSFMS通过FACS和PADS进行了验证。RSFMS被发现是一种具有出色心理测量学价值的工具。新量表可帮助治疗RTT个体的临床医生为该人群制定合适的管理策略。
