耐药结核病患者支持体系提高诊疗服务可及性的定性研究

Improving access to quality of care for drug-resistant tuberculosis patients:a qualitative study on patient-centered support system

目的分析耐多药/利福平耐药结核病(multidrug-resistant/rifampicin-resistant tuberculosis,MDR/RR-TB)患者支持体系对患者治疗依从性和治疗效果的作用,为完善以患者为中心的MDR/RR-TB诊疗服务支持体系提供依据。方法基于利益相关者理论,于2021年1—7月,采用目的抽样法,在上海、安徽、浙江、江苏,选取明确利益相关者(医保部门工作人员和省级疾病预防控制中心领导)、预期利益相关者(地市级疾病预防控制中心领导、基层疾病预防控制中心工作人员、MDR/RR-TB定点医院医务人员和MDR/RR-TB患者)、潜在利益相关者(MDR/RR-TB患者家属以及邻居或同事等)为访谈对象,进行有关患者支持的半结构式访谈。研究对象的纳入以信息达到编码或主题饱和以及意义饱和为标准。采用主题框架法分析访谈资料。结果共纳入访谈对象25人,其中明确利益相关者4人、预期利益相关者19人、潜在利益相关者2人。提炼出3个与MDR/RR-TB患者支持体系相关的主题,分别是明确利益相关者提供政策支持促进MDR/RR-TB患者获得诊疗管理服务,预期利益相关者的诊疗和管理支持提高患者治疗依从性、促进患者获得优质医疗服务,潜在利益相关者的支持是患者获得良好治疗结局的重要因素。个别省份开展的耐多药患者基本关怀服务项目提供的心理支持对提高患者依从性有重要作用。家庭成员的经济支持、治疗支持和精神支持有助于患者获得良好治疗结局。结论长江三角洲地区MDR/RR-TB患者支持体系能够为患者提供具有一定可及性的MDR/RR-TB诊疗服务,但仍存在不足,各利益相关方要提高重视程度,加强沟通协作,改善医疗服务的可及性和公平性。

Objective To analyze the role of patient support system in multidrug-resistant/rifampicin-resistant tuberculosis(MDR/RR-TB)treatment adherence and outcome,and provide evidence for deepening the patient-centered support system.Methods Based on the stakeholder analysis,definite stakeholders(administrators from the Department of Medical Insurance,and those from the provincial CDC),expectant stakeholders(administrators from regional CDC,health workers from primary CDCs,medical workers from designated MDR/RR-TB hospitals and MDR/RR-TB patients),and latent stakeholders(MDR/RR-TB patient families and their neighbors or colleagues)were selected using a purposive sampling.These stakeholders were subject to a semi-structured interview on patient support.The inclusion of participants ceased after reaching code or thematic saturation and meaning saturation,while thematic framework analysis was applied in interview data.Results The 25 interviewees included could be categorized into three groups of stakeholders,i.e.,4 definite stakeholders,19 expectant stakeholders and 2 latent stakeholders.Three themes summarized in this regard were definite stakeholders providing policy support to advance these patients′access to standardized diagnosis and treatment services;diagnosis and treatment and management support of expectant stakeholders of these patients to encourage their compliance to treatment and enable their access to high quality medical care;and support from latent stakeholders as a critical guarantee for the patients to welcome a desirable treatment outcome.Psychological support provided under MDR/RR-TB basic care program in some provinces contributed positively to raising patients′compliance.Economic support,treatment support from family menmbers ccould help the patients to welcome desirable outcomes.Conclusions MDR/RR-TB patient-centered support system operating in the Yangtze River delta provide the patients with MDR/RR-TB diagnostic and treatment services of some accessibility.Given the progress,there are still shortcomings for the respective stakeholders to enhance their attention and collaboration to improve the access and equity to medical service.