沙特阿拉伯的肌萎缩侧索硬化症护理：对提供者认知的调查。
Amyotrophic lateral sclerosis care in Saudi Arabia: A survey of providers' perceptions.
机构信息
Neuroscience Unit, Neurology Division, Internal Medicine Department, Faculty of Medicine, King Abdulaziz University Hospital, King Abdulaziz University, Jeddah, Saudi Arabia.
Neuromuscular Unit, King Fahad Medical Research Center, King Abdulaziz University, Jeddah, Saudi Arabia.
出版信息
Brain Behav. 2020 Oct;10(10):e01795. doi: 10.1002/brb3.1795. Epub 2020 Aug 15.
OBJECTIVE
Provision of care for patients with amyotrophic lateral sclerosis (ALS) is complex and requires the contribution of multiple healthcare professionals. Several international ALS care measures were developed to ensure optimal care for ALS patients. We looked at the rate of inconsistency in providing standard ALS care measures in Saudi Arabia (SA).
METHODS
A 5-point response survey was distributed to practicing neurologists in SA. They were asked to grade their perceived consistency of accessibility for 19 items of ALS care measures at their center. The list of ALS care measures items was derived from international ALS guidelines.
RESULTS
The response rate from neurologists was 47.3% (62/131), and the responses of 39 neurologists who follow ALS cases were included. Most of the selected ALS care measure items, 63.1% (12/19), were perceived by 50% or more of the ALS care providers to be not consistently accessible to their patients. The perception of ALS care providers of the inconsistent accessibility for ALS patients to ALS care measures was high for communication devices (92.3%), supportive equipment such as motorized wheelchairs (76.9%), end-of-life discussion (74.4%), and respiratory monitoring (66.7%).
CONCLUSION
Our data show that ALS patients in SA do not have consistent access to the recommended ALS care measures.
目的
肌萎缩侧索硬化症（ALS）患者的护理较为复杂，需要多学科医疗保健专业人员的共同努力。为了确保 ALS 患者得到最佳护理，已经制定了多项国际 ALS 护理措施。我们观察了沙特阿拉伯（SA）提供标准 ALS 护理措施的不一致率。
方法
向 SA 的执业神经科医生分发了一份 5 分制应答调查。他们被要求对其中心的 19 项 ALS 护理措施的可及性进行评分。ALS 护理措施的清单来源于国际 ALS 指南。
结果
神经科医生的回复率为 47.3%（62/131），其中包括 39 名跟踪 ALS 病例的神经科医生的回复。在所选的 ALS 护理措施项目中，有 63.1%（12/19）被 50%或更多的 ALS 护理提供者认为对其患者的可及性不一致。对于 ALS 患者获取 ALS 护理措施的不一致性，ALS 护理提供者的看法很高，包括沟通设备（92.3%）、支持性设备（如电动轮椅，76.9%）、临终讨论（74.4%）和呼吸监测（66.7%）。
结论
我们的数据表明，SA 的 ALS 患者无法始终如一地获得推荐的 ALS 护理措施。
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