深圳1型糖尿病联盟登记数据质量评价研究:基于中国1型糖尿病联盟协作研究平台网  

Quality evaluation of registration data of Shenzhen Type 1 Diabetes Alliance:based on the collaborative research platform network of China Type 1 Diabetes Alliance

作　　者：刘雪婷 李海燕[1] 吕凌波[1] 李明政[1] 黄艳[1] 李枢[2] 武红梅[3] 张琴[4] 陈传绮 孙辽[6] 周智广[7] 李霞[7] 阎德文[1] Liu Xueting;Li Haiyan;Lyu Lingbo;Li Mingzheng;Huang Yan;Li Shu;Wu Hongmei;Zhang Qin;Chen Chuanqi;Sun Liao;Zhou Zhiguang;Li Xia;Yan Dewen(Department of Metabolism and Endocrinology,Shenzhen Second People′s Hospital/the First Affiliated Hospital of Shenzhen University Shenzhen Clinical Research Center for Metabolic Disease,Shenzhen 518035;Department of Endocrinology,Huizhou Municipal Central Hospital,Huizhou 516001,China;Department of Endocrinology,Longgang District Central Hospital of Shenzhen,Shenzhen 518000,China;Department of Endocrinology,Shenzhen Children′s Hospital,Shenzhen 518038,China;Department of Endocrinology,Shenzhen Qianhai Shekou Free Trade Zone Hospital,Shenzhen 518067;Department of Endocrinology and Metabolism,the Fifth Affiliated Hospital of Sun Yat-sen University,Zhuhai 519000,China;Department of Metabolism and Endocrinology,the Second Xiangya Hospital of Central South University National Clinical Research Center for Metabolic Disease,Changsha 410011,China)

机构地区：[1]深圳市第二人民医院(深圳大学第一附属医院)内分泌科深圳市代谢性疾病临床医学研究中心,深圳518035 [2]惠州市中心人民医院内分泌科,惠州516001 [3]深圳市龙岗中心医院内分泌科,深圳518000 [4]深圳市儿童医院内分泌科,深圳518038 [5]深圳市前海蛇口自贸区医院内分泌科,深圳518067 [6]中山大学附属第五医院内分泌科,珠海519000 [7]中南大学湘雅二医院代谢内分泌科国家代谢性疾病临床医学研究中心,长沙410011

出　　处：《中国医师杂志》2022年第7期1060-1066,共7页Journal of Chinese Physician

基　　金：深圳市医疗卫生"三名工程"项目(SZSM201612007);深圳市代谢性疾病临床医学研究中心项目(深科技创新[2021]287号)。

摘　　要：目的对深圳1型糖尿病联盟(简称"深盟T1D")登记的数据质量进行评价,为持续提高数据录入质量提供评估与改进依据。方法纳入2018年12月至2021年7月间,由深盟T1D登记于中国1型糖尿病联盟协作研究平台网(简称"中国T1D网")的首诊1型糖尿病(T1DM)患者697例(深圳市内501例和市外196例)和复诊T1DM患者120例(深圳市内113例和市外7例)。从数据完成度、准确度和复诊情况三个维度对数据质量进行评价。数据完成度采用整体数据完成度和关键指标完成度进行评价;数据准确度采用血糖异常值概率进行评价;患者复诊情况利用复诊率进行评价。结果深盟T1D首诊T1DM患者特征以体型偏瘦[BMI(19.80±3.52)kg/m2]、青壮年[年龄(34.4±17.1)岁]为主,男女患者约各占一半[男性比例:52.4%(365/697)],确诊类型以经典T1DM[65.22%(150/230)]和成人隐匿性自身免疫性糖尿病(LADA)[26.08%(60/230)]为主,患者空腹血糖(FPG)[(10.93±6.98)mmol/L]和糖化血红蛋白(HbA_(1c))[(10.63±3.01)%]偏高。深盟T1D首诊T1DM患者整体数据完成度仅六成[(62.9±31.5)%]:填报完成度≥80%的首诊患者仅有一半[50.2%(350/697)],深圳市内整体数据完成度≥80%的患者较市外少[44.3%(222/501)vs 65.3%(128/196),P<0.001]。首诊关键指标完成度较好的有病程[76.2%(531/697)]、起病年龄[75.8%(528/697)]和糖尿病家族史[74.9%(522/697)]等,但均无完成度超过八成者,其中糖尿病自我管理行为评估问卷和量表得分两关键指标完全缺失;深圳市内和市外数据对比显示,日常血糖监测频率[46.1%(231/501)vs 64.3%(126/196),P<0.001]、目前胰岛素方案[44.3%(222/501)vs 63.3%(124/196),P<0.001]、起病至今糖尿病酮症酸中毒(DKA)次数[45.7%(229/501)vs 64.8%(127/196),P<0.001]及近1个月症状性低血糖次数[39.3%(197/501)vs 63.8%(125/196),P<0.001]等关键指标以市外填报完成度更高。此外,FPG和餐后2 h血糖(PPG)数据异常值概率较低[5.2%(24/466);3.8%(9/236)];复诊Objective To evaluate the data quality of Shenzhen Type 1 Diabetes Alliance(SZT1D),and to provide a basis for evaluation and improvement for the continuous improvement of data quality.Methods From December 2018 to July 2021,697 first-visit type 1 diabetes(T1DM)patients(including 501 in Shenzhen and 196 out-of-Shenzhen)and 120 re-visited T1DM patients(including 113 in Shenzhen and 7 out-of-Shenzhen)who were registered by SZT1D in collaborative research platform network of China Type 1 Diabetes Alliance(hereinafter referred to as China T1D).The data quality was evaluated from three dimensions:data completion,accuracy and revisit.The data completion degree was evaluated by the overall data completion degree and the key indicator completion degree;the data accuracy was evaluated by the probability of abnormal blood glucose value;the patient′s return visit was evaluated by the return visit rate.Results The main characteristics of T1DM in SZT1D were young and middle-aged adults[age:(34.4±17.1)years]with thin body[BMI:(19.80±3.52)kg/m2)],half of male and female patients[proportion of male:52.4%(365/697)];the main types of diagnosis were classical T1DM[65.22%(150/230)]and latent autoimmune diabetes in adults(LADA)[26.08%(60/230)],and the fasting blood glucose(FPG)[(10.93±6.98)mmol/L]and glycosylated hemoglobin(HbA_(1c))[(10.63±3.01)%]were high.The average completion rate of the overall data of the first diagnosed patients in SZT1D was only 60%[(62.9±31.5)%]:the number of patients with overall data completion≥80%in SZT1D was only 50.2%(350/697);the number of patients with overall data completion≥80%in Shenzhen was less than that outside Shenzhen[44.3%(222/501)vs 65.3%(128/196),P<0.001].The key indicators with better completion rate of first-visit were disease course[76.2%(531/697)],age of onset[75.8%(528/697)],family history of diabetes[74.9%(522/697)],etc.,but none of them had a completion rate of more than 80%,and the diabetes self-management behavior assessment questionnaire and scale score were completely m

关 键 词：糖尿病 1型 专病数据库 数据质量评估 大数据 

分 类 号：R587.1[医药卫生—内分泌]