摘要
目的:探究镇江市罕见病患者用药保障中存在的问题并分析原因,为提升罕见病患者的用药保障能力提供参考.方法:通过与镇江市的罕见病患者、专家以及相关部门管理人员访谈了解罕见病用药保障的现状及相关内容.使用扎根理论,将访谈资料导入NVivo 12.0 Plus软件进行三级编码,并对结果进行比较和梳理.结果:经过三级编码,最终形成了320 条初始概念、25 个范畴,提炼出药品保存、患者药品既定需求、药品供给、检查治疗、医疗服务提供方、罕见病药品保障和政策制度 7 个主范畴.目前,镇江市罕见病患者的用药保障存在较多问题,如药品供给短缺、开药过程繁琐、罕见病检查治疗项目不规范、罕见病用药保障不充分、政策宣传不足、基层服务能力较弱等问题.结论:当前镇江市罕见病患者用药保障中仍存在着药品供给短缺、保障待遇不充分等问题,可通过增加罕见病药品供给、建立针对罕见病的门诊药品目录、规范检查项目、提高保障待遇、加大科普宣传力度、提升基层医疗服务能力、加强精细化管理水平等方式完善.
Abstract
Objective:To explore the problems and analyze the reasons in the medication assurance for patients with rare dis-eases in Zhenjiang city,so as to provide references for enhancing the medication guarantee capacity for patients with rare diseases.Methods:Through interviews with rare disease patients,experts and managers of relevant departments in Zhenjiang,we learned a-bout the current situation and related content of rare disease medication assurance.Using grounded theory,the interview data were imported into NVivo 12.0 Plus software for three-level coding,and the results were compared and sorted out.Results:After three levels of coding,320 initial concepts,25 categories and 7 main categories were finally formed,including preservation,established drug demands of patients,drug supply,checkup and treatment,medical service providers,rare disease drug assurance and policy system.There were many problems in Zhenjiang city in terms of drug guarantee for patients with rare diseases,such as shortage of drug supply,cumbersome prescribing process,irregularities in the checkup and treatment programs,insufficient drug assurance,insufficient policy publicity,and weak primary medical service capacity.Conclusion:At present,there are still problems such as shortage of drug supply and insufficient protection treatment in drug assurance for patients with rare diseases in Zhenjiang city,which can be improved by increasing the supply of drugs for rare diseases,establishing an outpatient drug catalog for rare diseases,standardizing the checking items,improving medical security benefits,increasing the publicity of rare diseases,upgrading the ca-pacity of primary medical services,and strengthening the level of fine management.
维普
万方数据