Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network

被引:1
作者
Hirsch, Annemarie G. [1 ]
Conderino, Sarah [2 ]
Crume, Tessa L. [3 ]
Liese, Angela D. [4 ]
Bellatorre, Anna [3 ]
Bendik, Stefanie [2 ]
Divers, Jasmin [5 ]
Anthopolos, Rebecca [2 ]
Dixon, Brian E. [6 ,7 ]
Guo, Yi [8 ]
Imperatore, Giuseppina [9 ]
Lee, David C. [2 ]
Reynolds, Kristi [10 ]
Rosenman, Marc [11 ,12 ]
Shao, Hui [13 ]
Utidjian, Levon [14 ]
Thorpe, Lorna E. [2 ]
机构
[1] Geisinger, Dept Populat Hlth Sci, Danville, PA 17822 USA
[2] NYU, Grossman Sch Med, Dept Populat Hlth, New York, NY USA
[3] Univ Colorado, Dept Epidemiol, Lifecourse Epidemiol Adipos & Diabet LEAD, Anschutz Med Campus, Aurora, CO USA
[4] Univ South Carolina, Dept Epidemiol & Biostat, Columbia, SC USA
[5] NYU, Dept Fdn Med, Long Isl Sch Med, Mineola, NY USA
[6] Indiana Univ, Fairbanks Sch Publ Hlth, Dept Epidemiol, Indianapolis, IN USA
[7] Regenstrief Inst Inc, Ctr Biomed Informat, Indianapolis, IN USA
[8] Univ Florida, Dept Hlth Outcomes & Biomed Informat, Gainesville, FL USA
[9] Ctr Dis Control & Prevent, Div Diabet Translat, Atlanta, GA USA
[10] Dept Res & Evaluat, Kaiser Permanente Southern Calif, Pasadena, CA USA
[11] Ann & Robert H Lurie Childrens Hosp Chicago, Dept Pediat, Chicago, IL USA
[12] Northwestern Univ, Feinberg Sch Med, Chicago, IL USA
[13] Univ Florida, Coll Pharm, Dept Pharmaceut Outcomes & Policy, Gainesville, FL USA
[14] Childrens Hosp Philadelphia, Dept Biomed & Hlth Informat, Philadelphia, PA USA
来源
BMJ OPEN | 2024年 / 14卷 / 01期
关键词
adolescent; epidemiology; diabetes & endocrinology; health informatics; paediatric endocrinology; SAMPLE-SIZE; TYPE-1; PREVALENCE; COMPLICATIONS; INFERENCE; DISEASE; TRENDS; YOUTH; STATE;
D O I
10.1136/bmjopen-2023-073791
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Introduction Traditional survey-based surveillance is costly, limited in its ability to distinguish diabetes types and time-consuming, resulting in reporting delays. The Diabetes in Children, Adolescents and Young Adults (DiCAYA) Network seeks to advance diabetes surveillance efforts in youth and young adults through the use of large-volume electronic health record (EHR) data. The network has two primary aims, namely: (1) to refine and validate EHR-based computable phenotype algorithms for accurate identification of type 1 and type 2 diabetes among youth and young adults and (2) to estimate the incidence and prevalence of type 1 and type 2 diabetes among youth and young adults and trends therein. The network aims to augment diabetes surveillance capacity in the USA and assess performance of EHR-based surveillance. This paper describes the DiCAYA Network and how these aims will be achieved. Methods and analysis The DiCAYA Network is spread across eight geographically diverse US-based centres and a coordinating centre. Three centres conduct diabetes surveillance in youth aged 0-17 years only (component A), three centres conduct surveillance in young adults aged 18-44 years only (component B) and two centres conduct surveillance in components A and B. The network will assess the validity of computable phenotype definitions to determine diabetes status and type based on sensitivity, specificity, positive predictive value and negative predictive value of the phenotypes against the gold standard of manually abstracted medical charts. Prevalence and incidence rates will be presented as unadjusted estimates and as race/ethnicity, sex and age-adjusted estimates using Poisson regression. Ethics and dissemination The DiCAYA Network is well positioned to advance diabetes surveillance methods. The network will disseminate EHR-based surveillance methodology that can be broadly adopted and will report diabetes prevalence and incidence for key demographic subgroups of youth and young adults in a large set of regions across the USA.
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页数:12
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