自身免疫性肝病防治结合的协作研究平台分析

摘要/Abstract

摘要： 目的探讨建立自身免疫性肝病(autoimmune liver disease, AILD) 防治结合的协作研究平台的临床意义。方法分析AILD防治结合的协作研究平台的特点与优势、AILD的患者电子健康档案、平台团队的建立及管理,协作研究平台现存的不足及改善措施。AILD防治结合的协作研究平台注重人员建设,形成高效互助及具有运营有序的综合团队,强调构建以AILD患者及AILD诊疗为中心的协作研究模式。结果自建立并运营AILD防治结合的协作研究平台2年余,已收治常德地区肝病患者136例,其中确诊AILD或重叠综合征患者49例,在收入时,疾病已处于中晚期阶段,经AILD防治结合的协作研究平台及时诊断与治疗,达到临床和生化指标缓解,阻止病情进一步进展至肝硬化或肝衰竭。AILD防治结合的协作研究平台每年针对AILD等肝病患者举办专题讲座百余次,发放健康手册超过2千份,在肝病日举办大型义诊活动,指导AILD患者在协作研究平台注册并通过网络查阅化验结果,与责任医生通过网络平台互动等途径便于AILD患者了解病情,节省了不必要来回医院咨询的时间及费用。另外,患者还可主动参与健康讲座,与责任医生电话沟通,显著提高AILD患者健康管理能力及主动参与疾病治疗的依从性。结论 AILD防治结合的协作研究平台以“多对1”的服务模式为患者提供最佳诊疗及随访方案,有助于改善AILD患者预后,提高生活质量,对降低疾病负荷、改善人民健康具有重要的现实意义。

关键词: 自身免疫性肝病, 协作研究平台, 管理, 随访

Abstract: Objective To analyze how to establish a collaborative research platform of prevention and treatment for autoimmune liver disease (AILD) to manage AILD, reduce the risk of canceration in patients with AILD, improve the quality of life and prolong the life of patients. Methods The characteristics and advantages of the collaborative research platform of prevention and treatment for AILD, the electronic health records of AILD patients, the implementation and management of the platform team, the deficiencies and the improvement measures of the collaborative research platform were analyzed. The collaborative research platform of prevention and treatment of AILD focused on personnel training, forming an efficient, mutual assistance and comprehensive team, emphasizing the implementation of a collaborative research model centered on patients, AILD diagnosis and treatment. Results Since the implementation and management of the collaborative research platform of prevention and treatment for AILD, our department had treated 136 patients with liver disease in Changde for more than 2 years, including 49 patients diagnosed with AILD or overlap syndrome. Patients had already been in the middle and late disease stage admitted into our department. Patients had achieved clinical and biochemical index remission and prevented further progression to cirrhosis or liver failure after diagnosis and treatment from the collaborative research platform of prevention and treatment for AILD. The collaborative research platform combining AILD prevention and treatment holded more than 100 special lectures qriented by AILD and other liver diseases every year, distributed more than 2,000 health handbooks, hosted large-scale free clinic activities on World Hepatitis Day, helped AILD patients to register on the collaborative research platform and check the test results based on network, communicated with doctors to get illness information, save time and cost of unnecessary round-trip hospital consultation. In addition, patients could also actively participate in health lectures and communicate with doctor by telephone, which significantly improved the health management ability and the compliance of therapy of AILD patients. Conclusion The collaborative research platform of prevention and treatment of AILD provides patients best diagnosis and treatment based on the “many-to-one” service mode, which helps to improve the prognosis of AILD, improve the quality of life and reduce disease burden.

Key words: Autoimmune liver disease, Collaborative research platform, Management, Follow-up

彭芸, 李建辉, 鲁兵. 自身免疫性肝病防治结合的协作研究平台分析[J]. 肝脏, 2022, 27(10): 1120-1122.

PENG Yun, LI Jian-hui, LU Bing. Analysis of collaborative research platform for aild prevention and trearment[J]. Chinese Hepatolgy, 2022, 27(10): 1120-1122.

参考文献

[1] Floreani A, De Martin S, Secchi MF,et al. Extrahepatic autoimmunity in autoimmune liver disease. Eur J Intern Med,2019,59(1):1-7.
[2] Chang C, Tanaka A, Bowlus C, et al. The use of biologics in the treatment of autoimmune liver disease. Expert Opin Investig Drugs,2020,29(4):385-398.
[3] Burnevich ES, Popova EN, Ponomarev AB, et al. Autoimmune liver disease (primary biliary cholangitis/autoimmune hepatitis-overlap) associated with sarcoidosis (clinical cases and literature review). Ter Arkh,2019,91(1):89-94.
[4] To U, Silveira M. Overlap Syndrome of Autoimmune Hepatitis and Primary Biliary Cholangitis. Clin Liver Dis,2018,22(3):603-611.
[5] Bernts LHP, Jones DEJ, Kaatee MM, et al. Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER. Orphanet J Rare Dis. 2019,14(1):169-176.
[6] Zecher BF, Buescher G, Willemse J, et al. Prevalence of COVID-19 in patients with autoimmune liver disease in Europe: a patient-oriented online survey. United European Gastroenterol J,2021,9(7):797-808.
[7] Liu B, Zhang YX, Zhang WH, et al. Changing trends in etiologies of hospitalized patients with liver disease during 2006-2014. Zhonghua Gan Zang Bing Za Zhi,2018,26(6):446-450.
[8] 杨林,陆阳,胡海洋,等.临床科室效能建设的保障能力及其构成要素.中国医院,2022,26(1):65-68.
[9] 刘荣梅,李雪梅,孟雯,等.基于某三级甲等医院慢性病管理平台的全程肝病防治模式探讨.中国社会医学杂志,2016,33(3):215-218.
[10] 周亚旭,王春鸣,周莹,等平.医院中层管理人员对学科建设与多学科协作诊疗认知评价研究.中国医院管理,2021,41(10):46-50.
[11] 施弘,李云攀,谢秀英,等.门诊慢病多学科协作移动互联服务模式设计应用.医学信息,2021,34(2):28-30.
[12] 孙文静,陈东风.非酒精性脂肪性肝病的多学科协作综合诊断与治疗.中华肝脏病杂志,2015,23(10):727-729.
[13] 王晓云,李林峰,郭佺,等.肝胆肿瘤疾病智能化诊疗模式的发展及启示.临床肝胆病杂志,2019,35(10):2360-2364.
[14] 刘荣梅,孟雯,刘梦佳,等.慢性肝病会员长期随访管理策略探讨.中国社会医学杂志,2018,35(6):647-650.
[15] 陈露,徐道亮,居益君,等.门诊多学科协作诊疗信息平台构建与应用.中国数字医学,2017,12(9):53-55.