中枢神经系统自身免疫性脱髓鞘病患者门诊随访依从性调查

Survey of the follow-up compliance of the patients with central nervous system autoimmune demyelinating disease

目的研究中枢神经系统自身免疫性脱髓鞘病患者门诊随访依从性及其影响因素,为提出针对性措施提供依据。方法拟定调查问卷,采用电话问询的方式对中枢神经系统脱髓鞘疾病数据库中的患者进行问卷调查,将所研究的影响因素进行分析。结果单因素分析表明,男性、对疾病特点缺乏了解、初中及以下教育程度、非城镇医疗保险、外省居住和症状最重时扩展致残状态量表(EDSS)评分较低的患者门诊随诊依从性较差。多因素logistic回归分析结果显示,对疾病特点是否了解、是否外省居住和症状最重时EDSS评分具有统计学意义(P<0.05)。其中对疾病特点是否了解(OR=4.327,95%CI=2.200～8.511)和是否外省居住(OR=4.377,95%CI=1.133～16.907)是影响患者能否定期门诊随诊的独立危险因素;而症状最重时EDSS评分则为患者能否定期门诊随诊的保护因素(OR=0.845,95%CI=0.724～0.986),症状最重时EDSS评分越高的患者门诊随诊依从性更好。对目前治疗无信心是患者门诊随诊依从性差常见的主观原因。结论对疾病特点缺乏了解、症状最重时EDSS评分较低和居住在外省的患者门诊随诊依从性更差。

Objective To explore the follow-up compliance of the patients with central nervous system autoimmune demyelinating disease.Method A follow up survey questionnaire was designed and the questions finished based on the databank information and supplemented by the telephone survey,the influencing factors were analysed.Results A total of 276 patients were included,192 of the 276 patients（69.6%） responded to the questionnaire.Univariate analysis showed that male,lacking of the knowledge about the disease specific features,poor education background,without urban medical insurance,living outside of Tianjin,and the lower EDSS score at their most critical condition were the poor follow-up compliance factors.Multivariate logistic regression analysis showed that poor understanding of the disease features,living outside of the municipality,and the lower EDSS score at the most critical condition took significant roles.Among these,lacking of the knowledge about the disease（OR= 4.327,95%CI= 2.200～ 8.511） and living outside of the municipality（OR=4.377,95%CI= 1.133～16.907） were the independent risk factors for poor follow-up compliance;however,the lower EDSS score at the most critical condition was the protective factor（OR= 0.845,95%CI= 0.724～0.986）,patients with the higher EDSS score at the most critical condition had better compliance.Having less confidence to the therapy was the most common subjective reason for the poor follow-up compliance.Conclusion Lacking of the knowledge about the disease,living outside of Tianjin,and the lower EDSS score at the most critical condition are significant for poor followup compliance.