以临床路径为导向的罕见病优化管理诊疗模式的探索

Exploration of clinical pathway-oriented optimal management diagnosis and treatment model for rare diseases

以库欣综合征这一罕见病作为范本,采用“计划、实施、检查、行动”(PDCA)路径,探索新方法以优化临床路径,可提高罕见病的诊疗质量和效率。梳理既往诊疗模式存在的问题后,通过多种方式优化路径,建立新路径的标准化工作流程(SOP)。在对优化模式的评价中,纳入北京协和医院内分泌科病房收治的55例库欣综合征患者,男19例,女36例,年龄为(41.8±14.4)岁(6~68岁)。根据入院时是否被纳入新路径管理,分为路径组(28例)和对照组(27例),从时间、疗效、安全性和费用评估等路径优化效果。结果发现,路径组与对照组相比,内分泌科住院总时间缩短,血皮质醇节律、小剂量地塞米松抑制试验和双侧岩下窦静脉取血等关键检查时间均缩短(均P<0.05);手术后血总皮质醇下降程度、术后并发症的发生率和住院各项费用间的差异均无统计学意义(均P>0.05)。优化路径在保证就医质量、安全及费用不增加的基础上,提升了医疗效率。本研究提出针对复杂疾病的PDCA路径优化并建立SOP流程,为以患者为中心、以临床路径为导向的罕见病诊疗模式提供了优化管理经验。

This study takes Cushing′s syndrome,a rare disease,as a model,and adopts the path of"Plan,Do,Check,Action"(PDCA)to explore new methods to optimize the clinical path,can improve the quality and efficiency of diagnosis and treatment of rare diseases.After sorting out the problems existing in the previous diagnosis and treatment mode,our team optimizes the path in various ways and establishes a standard operation procedure(SOP)for the new path.In the evaluation of the optimized mode,55 patients with Cushing′s syndrome were admitted to the Department of Endocrinology,Peking Union Medical College Hospital,including 19 males and 36 females,aged(41.8±14.4)years(6-68 years).The pathway group(28 cases)and the control group(27 cases)were divided according to whether they were included in the new path management at the time of admission,and the effect of path optimization was assessed in terms of time,efficacy,safety and cost.The results showed that compared with the control group,the pathway group had a shorter time of hospitalization in the Department of Endocrinology and critical tests,such as blood cortisol rhythm,low-dose dexamethasone inhibition test,and bilateral inferior petrosal sinus sampling(all P<0.05).There was no significant differences in the decrease of total cortisol after operation,the incidence of postoperative complications,and hospitalization expenses(all P>0.05).The optimized path improves the medical efficiency while ensuring medical quality,safety and no increase in cost.This study proposes PDCA path optimization for complex diseases and establishes SOP process,which provides experience in management optimization for the patient-centered and clinical path-oriented diagnosis and treatment mode of rare diseases.