(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.
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http://dx.doi.org/10.3390/diagnostics13132148 | DOI Listing |
Front Public Health
January 2025
Department of Rehabilitation Medicine, Shenzhen Children's Hospital, Shenzhen, Guangdong, China.
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View Article and Find Full Text PDFParkinsonism Relat Disord
January 2025
Movement Disorders Unit, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil.
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JMIR Form Res
January 2025
Department of Psychology, Lakehead University, Thunder Bay, ON, Canada.
Background: The minimal clinically important difference (MCID) is an important threshold to consider when evaluating the meaningfulness of improvement following an intervention. The JoyPop app is an evidence-based smartphone app designed to improve resilience and emotion regulation. Information is needed regarding the JoyPop app's MCID among culturally diverse youth.
View Article and Find Full Text PDFQual Life Res
January 2025
Adelphi Values, Adelphi Mill, Bollington, Cheshire, UK.
Purpose: Meaningful change thresholds are important to help interpret patient-reported outcome scores. To date, meaningful within-patient change (MWPC) thresholds have only been proposed for NSCLC-SAQ total score. This study proposed clinically MWPC thresholds, and group-level minimal important change/difference (MIC/MID) thresholds for both improvement and worsening for the Non-Small Cell Lung Cancer- Symptom Assessment Questionnaire (NSCLC-SAQ) total and symptom scores.
View Article and Find Full Text PDFFront Public Health
January 2025
Department of Ophthalmology, Faculty of Medicine, Universitas Indonesia-Dr. Cipto Mangunkusumo Hospital, Jakarta, Indonesia.
Introduction: The Stigma Assessment and Reduction of Impact (SARI) Stigma Scale is an instrument developed to evaluate stigma in Leprosy patients. Despite existing versions in Indonesian, the absence of an endemic area language version of a reliable assessment tool presents a barrier to effective interventions in regions like Ambon. This study aims to evaluate the validity and reliability of the Ambonese-Malay Language of SARI Stigma Scale questionnaire.
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