杜氏肌营养不良症患者呼吸功能下降的测量：一项联合分析。
Measurement of respiratory function decline in patients with Duchenne muscular dystrophy: a conjoint analysis.
作者信息
Ripamonti Elena, D'Angelo Grazia
机构信息
Elma Research s.r.l., Via Felice Casati 32, Milano, Italy.
Unità Operativa Semplice Patologie Neuromuscolari, Riabilitazione Funzionale, IRCCS "E. Medea", Via Don Luigi Monza, 20, 23842 Bosisio Parini LC, Italy.
出版信息
Neurodegener Dis Manag. 2018 Apr;8(2):89-96. doi: 10.2217/nmt-2017-0052. Epub 2018 Feb 7.
AIM
In Duchenne muscular dystrophy (DMD), little attention has been paid to severity of respiratory function decline (RFD) based on disease progression. We performed a conjoint analysis among 123 Italian clinicians to generate a scale for RFD in DMD patients.
METHODS
Before the interview, 11 attributes were selected by discussion among experts. 32 'patient profiles' were generated. Each physician assessed the severity of RFD for each profile. Each level/attribute was assigned an estimated usefulness to understand its impact on RFD.
RESULTS
The identified attributes were forced vital capacity, forced vital capacity decline, dysphagia, type of ventilation and peak cough flow. These results allowed the development of a scale for RFD severity.
CONCLUSION
This scale can stratify DMD patients according to the severity of their RFD.
目的
在杜氏肌营养不良症（DMD）中，基于疾病进展对呼吸功能下降（RFD）的严重程度关注较少。我们对123名意大利临床医生进行了联合分析，以制定DMD患者RFD的量表。
方法
在访谈前，专家们通过讨论选择了11个属性。生成了32个“患者概况”。每位医生评估了每个概况的RFD严重程度。为每个水平/属性分配了估计的有用性，以了解其对RFD的影响。
结果
确定的属性为用力肺活量、用力肺活量下降、吞咽困难、通气类型和咳嗽峰值流速。这些结果有助于制定RFD严重程度量表。
结论
该量表可根据DMD患者RFD的严重程度对其进行分层。
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