基于一家国家儿童医学中心住院病案首页肾脏专科疾病诊断谱及其一般特征的横断面调查

目的 探索基于住院病案首页专科医疗数据的分析方法,描述复旦大学附属儿科医院(我院)肾脏专科的医疗服务特色。方法 横断面调查。以医院信息系统(HIS)住院病案首页2014年1月1日至2018年12月31日肾脏专科全样本数据为基础。数据脱敏后提取本研究目标字段建立备份数据库,行数据清洗(ICD-10编码国标新旧版映射、现住址简约为省市),建立肾脏(相关)专科疾病字典库(DASF-PEKDI)并分类(原发性肾小球疾病、继发性肾脏疾病、遗传性肾小球疾病、肾小管疾病、泌尿系感染、先天性肾脏和尿路畸形、尿石症、肾血管病变、夜遗尿、肾脏肿瘤、肾功能不全/肾衰竭、肾脏替代治疗、血尿/蛋白尿、其他)。结果 在我院HIS系统中检索住院病案首页肾脏专科标识性符号的住院病案7 898份,从DASF-PEKDI导出1091条国标新版ICD-10诊断编码,其中肾脏(相关)专科疾病诊断编码共285条,逐条审读剔除非明确的肾脏疾病诊断编码、合并症编码、手术状态编码,专科疾病诊断编码共227条,同时还纳入3条肾脏穿刺术操作编码(ICD-9-CM3)。我院肾脏科出院3 963例(7 898例次);肾脏(相关)专科疾病占90.1%(3 571例),中位年龄5.8岁(0~20岁),男61.3%,肾脏(相关)专科疾病人次占90.5%(7 144人次),5年间上海市以外的病例由2014年72.1%上升至2018年85.7%。年均住院总费用每人次13 716元,平均住院9.4 d。原发性肾小球疾病以原发性肾病综合征为主(78.1%),继发性肾脏疾病以紫癜性肾炎和狼疮性肾炎为主(共占78.4%),先天性肾脏和尿路畸形(CAKUT)诊断构成比由2014年的9.3%上升至2018年的15.3%,肾功能不全/肾衰竭以慢性肾脏病2~5期为主(共占90.7%),肾脏替代治疗腹膜透析占62.2%、血液透析占12.6%、肾移植占25.2%。结论 住院病案首页的肾脏专科疾病诊断谱首先需要基于ICD-10编码的标化,并建立肾脏(相关)专科疾病字典库和分类,基于此才能准确反映肾脏专科住院疾病的人口学和专科化特点。

A cross-section study based on the front page of the inpatient medical records – The diagnostic spectrum and demographic characteristics of kidney disease treated in the department of pediatric nephrology of a national children’s medical center

Objective The front page of inpatient medical records consists of structured data domains including demography, diagnosis, procedures and hospitalization expenditure. To explore and develop an analysis method based on the medical big data of the front page of inpatient medical records and describe the brief characteristics of medical service provided by pediatric nephrology in a national children's medical center.Methods We performed a cross section study based on the data of the front page of the inpatient medical records from January 1, 2014 to December 31, 2018 derived from the pediatric nephrology department in the hospital information system (HIS). After data desensitization, the selected data elements on the structured front page were extracted, and the backup database DASF-PEKDI (a database searched by fields for pediatric kidney disease inpatients)was established. The ICD codes were mapped to a standardized version. The current addresses were simplified to provinces and cities. The repository of ICD diagnostic codes of renal (related) disease was established and classified into 14 categories: primary glomerular disease, secondary glomerular disease, genetic glomerular disease, renal tubular disease, urinary tract infection, congenital abnormality of kidney and urinary tract, urolithiasis, renal angiopathy, nocturnal enuresis, renal tumors, renal insufficiency / renal failure, renal replacement therapy, hematuria / proteinuria and others.Results In HIS of our hospital, 7,898 inpatient medical records of pediatric nephrology identified on the front page of inpatient medical records were retrieved. One thousand and ninety-one ICD-10 diagnostic codes were derived from DASF-PEKDI, among which 285 were diagnostic codes of renal (related) disease, including codes of diseases requiring differentiation with renal diseases, codes of morbidity and post-operational status. Among 285 diagnositic codes, 227 codes belonged to specific renal disease. Three codes of procedure (ICD-9-CM-3) were also included. Three thousand nine hundred and sixty three patients (7,898 cases) were discharged from department of pediatric nephrology, among which 90.1% (3,571 patients) were with renal (related) diseases, with a median age of 5.8 years (0-20 years), and 61.3% of them were male children. Among 7,898 cases, patients living outside Shanghai during the five years increased from 72.1% in 2014 to 85.7% in 2018. The average hospitalization cost was 13,716 RMB and the average hospitalization duration was 9.4 days. Primary nephrotic syndrome accounted for 78.1% of the primary glomerular disease. Henoch-Schonlein purpura nephritis and lupus nephritis accounted for 78.4% of secondary kidney disease. The proportion of CAKUT diagnosis increased from 9.3% in 2014 to 15.3% in 2018. Chronic kidney disease (stage 2-5) accounted for 90.7% of renal insufficiency / renal failure. The modality of renal replacement therapy includes peritoneal dialysis (62.2%), hemodialysis (12.6%) and kidney transplantation (25.2%).Conclusion The structured data elements on the front page of inpatient medical records provide a new tool to accelerate clinical study through data capture and analysis. The authors developed a front page based analysis method. The diagnosis spectrum of renal diseases on the front page of inpatient medical record needs to be standardized based on ICD-10 codes, and the database and classification of renal (related) diseases should be established, so as to further accurately analyze the demographic and characteristics of kidney disease of inpatients in the department of pediatric nephrology.