[成年早期幼年特发性关节炎的生物制剂治疗：从儿科护理向成人护理的过渡]
[Therapy of juvenile idiopathic arthritis in early adulthood with biologics: transition from pediatric to adult care].
作者信息
Niewerth M, Minden K, Klotsche J, Horneff G
机构信息
Deutsches Rheuma-Forschungszentrum Berlin, Charitéplatz 1, 10117, Berlin, Deutschland,
出版信息
Z Rheumatol. 2014 Aug;73(6):532-40. doi: 10.1007/s00393-014-1378-z.
BACKGROUND
The majority of patients with juvenile idiopathic arthritis (JIA) need specialized care when they enter adulthood. An increasing number of these patients take biologic disease modifying antirheumatic drugs (DMARDs) at the time of transition. The biologic register BiKeR provides information about the health status and healthcare situation of JIA patients during childhood and adolescence and with their entrance into adulthood these patients are systematically transferred to JuMBO, the follow-up register for young adults with JIA treated with biologics and nonbiologic DMARDs.
OBJECTIVE
The aim of this study was to investigate the healthcare situation of patients with JIA during transition from pediatric to adult care.
METHODS
The current analyses included patients who were successfully transferred from the BiKeR to JuMBO registers. The DMARD treatment and patient-reported outcome (i.e. disease activity, pain and functional ability) were assessed at the last documentation in BikeR and at the first as well as the last documentation in JuMBO.
RESULTS
During the transition period 1 in 10 JIA patients stopped DMARD therapy and 1 in 20 patients did not visit a physician for adults. Three-quarters of the adult JIA patients included in JuMBO (N = 811) reached adult rheumatology care. Adult rheumatologists usually continued therapy with biologics in these patients. Every second patient was still being treated with etanercept, 5 years after the start of the first treatment with biologics. Adult rheumatologists changed the biologic substance in every fourth patient, mainly because of treatment failure. In comparison to patients in regular adult rheumatology care, those who did not remain in specialized care had a higher discontinuation rate of biologics. Moreover, patients with sporadic use of medical care had a significantly poorer health status than those with a regular use of medical care at least every 6 months.
CONCLUSION
The data show that there is a need for improving healthcare during the period of transition from pediatric to adult rheumatology.
背景
大多数幼年特发性关节炎（JIA）患者成年后需要专科护理。越来越多的这类患者在病情转变时使用生物性改善病情抗风湿药（DMARDs）。生物登记册BiKeR提供了JIA患者儿童期和青春期的健康状况及医疗情况信息，随着这些患者步入成年，他们会被系统地转入JuMBO，这是一个针对接受生物制剂和非生物DMARDs治疗的成年JIA患者的随访登记册。
目的
本研究旨在调查JIA患者从儿科护理过渡到成人护理期间的医疗情况。
方法
当前分析纳入了从BiKeR成功转入JuMBO登记册的患者。在BiKeR的最后一次记录以及JuMBO的第一次和最后一次记录时，评估了DMARD治疗情况以及患者报告的结果（即疾病活动度、疼痛和功能能力）。
结果
在过渡期间，每10名JIA患者中有1人停止了DMARD治疗，每20名患者中有1人没有去看成人科医生。纳入JuMBO的成年JIA患者中有四分之三（N = 811）获得了成人风湿病护理。成年风湿病医生通常会继续对这些患者使用生物制剂进行治疗。在开始首次生物制剂治疗5年后，每两名患者中仍有一人在使用依那西普进行治疗。成年风湿病医生会在每四名患者中更换一次生物制剂，主要原因是治疗失败。与接受常规成人风湿病护理的患者相比，未继续接受专科护理的患者生物制剂停药率更高。此外，偶尔接受医疗护理的患者健康状况明显比至少每6个月定期接受医疗护理的患者差。
结论
数据表明，在从儿科风湿病护理过渡到成人风湿病护理期间，需要改善医疗护理。
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