Perceived efficacy of salbutamol by persons with spinal muscular atrophy: A mixed methods study
Perceived efficacy of salbutamol by persons with spinal muscular atrophy: A mixed methods study
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DOI：
10.1002/mus.25102
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发表时间：
2016-11-01
期刊：
影响因子：
3.4
通讯作者：
Morandi, Lucia
中科院分区：
文献类型：
--
作者：
Giovannetti, Ambra M.;Pasanisi, Maria Barbara;Morandi, Lucia
简介：本研究的目的是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表 II (WHODAS II) 和疲劳严重程度量表 (FSS) 对其测量的有用性。方法：进行了纵向混合方法研究。 10 名患者接受了采访并完成了 WHODAS II 和 FSS 问卷，以评估 2 个时间点的残疾和疲劳情况。归纳主题分析用于定性数据。进行非参数Wilcoxon 检验进行定量分析。结果：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 可靠地捕获了患者残疾和疲劳的变化。结论：混合方法设计使我们能够确定参与者经历沙丁胺醇作用的功能域。患者对治疗感到满意，疲劳减轻，功能改善，副作用很少见。肌肉神经，2016 肌肉神经54：843-849，2016
Introduction: 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. Methods: 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. Results: All participants reported an improvement in their condition after salbutamol consumption. WHODAS II and FSS reliably captured changes in patients' disability and fatigue. Conclusions: 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 Nerve54: 843-849, 2016