Isabel Voigt, Katja Akgün, Hernan Inojosa, Judith Haas, Herbert Temmes, Sven G Meuth, Gavin Giovannoni, Tjalf Ziemssen
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引用次数: 0
Abstract
Background: The quality of treatment is especially critical in the context of complex and chronic diseases such as multiple sclerosis (MS). The Brain Health Initiative, an independent international consortium of neurologists, reached a consensus on time-based quality standards prioritizing brain health-focused care for people with MS.
Objectives: To gain deeper insights into the transferability of these quality standards to a specific area, we conducted a survey among MS experts across various MS centers in Germany.
Methods: Participants were asked about time frames considered high standards and those currently being implemented in daily routine based on their experience.
Results: The results reveal a large gap between ideal conceptions and their adaptation in the real world, mostly due to a lack of resources.
Conclusions: Nevertheless, these guidelines and recommendations can be aspired to as ideals. Consensual and inclusive clinical pathways complemented by measurable quality indicators are needed to improve care and approach these ideals. Neither exists in the current management of MS.
背景:治疗质量对于多发性硬化症(MS)等复杂的慢性疾病尤为重要。脑健康倡议(Brain Health Initiative)是一个由神经科医生组成的独立国际联盟,该联盟就以时间为基础的质量标准达成了共识,即优先考虑为多发性硬化症患者提供以脑健康为重点的治疗:为了深入了解这些质量标准在特定领域的可移植性,我们对德国各多发性硬化症中心的多发性硬化症专家进行了一项调查:方法:我们向参与者询问了被认为是高标准的时间框架,以及根据他们的经验目前在日常工作中实施的标准:结果:调查结果显示,理想构想与现实世界的适应性之间存在巨大差距,主要原因是缺乏资源:尽管如此,这些指南和建议仍可作为理想来追求。为了改善护理并接近这些理想,需要有一致的、包容性的临床路径,并辅以可衡量的质量指标。而在目前的多发性硬化症管理中,两者都不存在。