建立中国运动神经元病医疗规范和持续质量改进体系

Establish a Medical Standard and Continuous Quality Improvement System for Motor Neuron Disease in China

运动神经元病(motor neuron disease,MND)是一组神经变性疾病,肌萎缩侧索硬化(amyotrophic lateral sclerosis,ALS)是其主要类型。目前ALS/MND缺乏特效诊疗手段,患者预后差。ALS/MND虽然较罕见,但目前我国该系列疾病住院患者有快速增长趋势,结合我国实际情况,存在ALS/MND临床医疗质量控制的迫切需求。国家神经系统疾病医疗质量控制中心于2022年设立了MND质控专病组,启动了ALS/MND临床医疗质量控制体系建设。以“建立中国运动神经元病医疗规范、持续质量改进体系”为核心理念,MND专病组通过系统调研,利用德尔菲法制定了ALS医疗质量控制指标,从统一诊断标准、形成疾病全面管理概念、规范治疗方案等方面系统完善ALS的住院医疗质量控制。除制订指标外,专病组还进行了推进临床诊疗核心数据元、MND质量控制信息平台建设以及通过全国同质化教学系列活动保证临床实践一致性等工作。质量控制的方案应是动态的,专病组将结合实际,确保质量控制方案在实际应用中的有效性和可行性。未来,该体系的不断发展和完善将为ALS/MND的临床医疗工作提供科学规范的质量控制系统。

Motor neuron disease(MND)is a group of neurodegenerative diseases,with amyotrophic lateral sclerosis(ALS)being the primary type of MND.At present,ALS/MND lacks specific diagnosis and treatment methods,and the prognosis of patients is poor.Although ALS/MND is rare,there is a rapid increase in the number of hospitalized patients in China.Considering the practical situation in China,there is an urgent need for standardized medical quality control system of ALS/MND.The National Center for Healthcare Quality Management in Neurological Diseases set up the MND Working Group in 2022 and initiated the construction of a clinical quality control system for ALS/MND.Through systematic research,the MND Working Group formulated the core concept of“establishing a medical standard and continuous quality improvement system for MND in China”and utilized the Delphi method to develop quality control indicators in ALS.This includes systematic quality control of the inpatient diagnosis and treatment process of ALS,covering unified diagnostic standards,a comprehensive patient management approach,and standardized treatment protocols.Beyond quality control indicators,the working group also carried out the work of promoting the core data elements of clinical diagnosis and treatment,the construction of the MND quality control information platform,and ensuring the consistency of clinical practice through a national series of standardized teaching sessions.The quality control program should be dynamic,and the working group will integrate practical considerations to ensure the effectiveness and feasibility of the quality control measures in real-world applications.In the future,the continuous development and refinement of this system will provide a scientific and standardized quality control system for the clinical diagnosis and treatment of ALS/MND.