Giovannetti Ambra M, Pasanisi Maria Barbara, Černiauskaitė Milda, Bussolino Chiara, Leonardi Matilde, Morandi Lucia
Department of Neuroimmunology and Neuromuscular Diseases, SOD Day Hospital/Day Service, Neurological Institute C. Besta IRCCS Foundation, Via Celoria 11, 20133, Milan, Italy.
Department of Neurosurgery, Radiotherapy Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
Muscle Nerve. 2016 Nov;54(5):843-849. doi: 10.1002/mus.25102. Epub 2016 Jul 15.
The aim of this study was to assess the perceived effect of salbutamol in adult patients with spinal muscular atrophy and to evaluate the usefulness of the World Health Organization Disability Assessment Schedule II (WHODAS II) and Fatigue Severity Scale (FSS) for its measurement.
A longitudinal mixed methods study was performed. Ten patients were interviewed and completed WHODAS II and FSS questionnaires to assess disability and fatigue at 2 time-points. Inductive thematic analysis was used for qualitative data. The non-parametric Wilcoxon test was performed for quantitative analysis.
All participants reported an improvement in their condition after salbutamol consumption. WHODAS II and FSS reliably captured changes in patients' disability and fatigue.
The mixed methods design allowed us to identify the functional domains in which participants experienced effects of salbutamol. Patients were satisfied with the treatment as shown by decreased fatigue, improved functioning, and infrequent side effects. Muscle Nerve, 2016 Muscle Nerve 54: 843-849, 2016.
本研究旨在评估沙丁胺醇对成年脊髓性肌萎缩症患者的感知效果，并评估世界卫生组织残疾评估量表第二版（WHODAS II）和疲劳严重程度量表（FSS）在测量方面的有用性。
进行了一项纵向混合方法研究。对10名患者进行访谈，并在两个时间点完成WHODAS II和FSS问卷，以评估残疾和疲劳情况。对定性数据采用归纳主题分析。对定量分析进行非参数威尔科克森检验。
所有参与者均报告服用沙丁胺醇后病情有所改善。WHODAS II和FSS可靠地反映了患者残疾和疲劳的变化。
混合方法设计使我们能够确定参与者体验到沙丁胺醇效果的功能领域。患者对治疗感到满意，表现为疲劳减轻、功能改善且副作用较少。《肌肉与神经》，2016年 肌肉与神经54: 843 - 849，2016年。
