Artilheiro Mariana Cunha, Iannicelli Juliana Rodrigues, Polido Graziela Jorge, Fernandes Tatiana Ribeiro, Almeida Leandro Augusto de, Mendonça Rodrigo Holanda, Camelo Clara Gontijo, Moreno Cristiane Araújo Martins, Zanoteli Edmar
Universidade de São Paulo, Faculdade de Medicina, Departamento de Neurologia, São Paulo SP, Brazil.
Arq Neuropsiquiatr. 2025 Mar;83(3):1-6. doi: 10.1055/s-0045-1805072. Epub 2025 Mar 19.
With the emergence of new therapies for spinal muscular atrophy linked to chromosome 5q (SMA-5q), capturing motor function changes in the upper limbs (ULs) become crucial for assessing treatment efficacy and monitoring changes in the disease. The translation and cultural adaptation of the revised upper-limb module (RULM) into Brazilian Portuguese will enable implementation in clinical settings and facilitate the conduction of national studies.
To translate, cross-culturally adapt, and validate the RULM to Brazilian Portuguese.
The study was conducted in two phases: translation and cross-cultural adaptation, and the reliability assessment. Both phases followed recommendations from international guidelines. The analysis of the psychometric properties was performed with 21 individuals with SMA-5q, all of whom were at least 30-months-old and capable of sitting independently. Statistical analyses were performed using Cohen's Kappa analysis (K) and the intraclass correlation coefficient (ICC).
The interrater agreement was considered excellent for items A to T (K > 0.81) and good (0.61-0.80) for items G and M. The reliability analysis showed an ICC of 0.998, indicating an extremely satisfactory level.
The Brazilian Portuguese version of the RULM has been shown to be valid and reliable for the assessment of SMA-5q individuals older than 2 years of age who could sit.
随着与5号染色体相关的脊髓性肌萎缩症（SMA - 5q）新疗法的出现，捕捉上肢（UL）的运动功能变化对于评估治疗效果和监测疾病变化至关重要。将修订后的上肢模块（RULM）翻译成巴西葡萄牙语并进行文化调适，将使其能够在临床环境中应用，并便于开展全国性研究。
将RULM翻译成巴西葡萄牙语，进行跨文化调适并验证其有效性。
该研究分两个阶段进行：翻译和跨文化调适，以及可靠性评估。两个阶段均遵循国际指南的建议。对21名SMA - 5q患者进行了心理测量学特性分析，所有患者年龄均至少30个月且能够独立坐立。使用科恩卡方分析（K）和组内相关系数（ICC）进行统计分析。
评估者间一致性在A至T项被认为极佳（K > 0.81），在G和M项为良好（0.61 - 0.80）。可靠性分析显示ICC为0.998，表明水平极其令人满意。
巴西葡萄牙语版的RULM已被证明对于评估2岁以上能够坐立的SMA - 5q患者是有效且可靠的。
