Design and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system

被引：31

作者：

Grinspan, Zachary M. ^{[1
,2
]}

Patel, Anup D. ^{[3
]}

Shellhaas, Renee A. ^{[4
]}

Berg, Anne T. ^{[5
,6
]}

Axeen, Erika T. ^{[7
]}

Bolton, Jeffrey ^{[8
,9
]}

Clarke, David F. ^{[10
]}

Coryell, Jason ^{[11
,12
]}

Gaillard, William D. ^{[13
,14
]}

Goodkin, Howard P. ^{[7
]}

Koh, Sookyong ^{[15
]}

Kukla, Alison ^{[16
]}

Mbwana, Juma S. ^{[13
,14
]}

Morgan, Lindsey A. ^{[17
,18
,19
]}

Singhal, Nilika S. ^{[20
,21
]}

Storey, Margaret M. ^{[22
]}

Yozawitz, Elissa G. ^{[23
,24
]}

Abend, Nicholas S. ^{[25
,26
]}

Fitzgerald, Mark P. ^{[25
,26
]}

Fridinger, Sara E. ^{[25
,26
]}

Helbig, Ingo ^{[25
,26
,27
,28
]}

Massey, Shavonne L. ^{[25
,26
]}

Prelack, Marisa S. ^{[25
,26
]}

Buchhalter, Jeffrey ^{[29
]}

机构：

[1] Weill Cornell Med, Dept Populat Hlth Sci, 402 E 67th St, New York, NY 10065 USA

[2] Weill Cornell Med, Dept Pediat, New York, NY USA

[3] Nationwide Childrens Hosp, Div Neurol, Columbus, OH USA

[4] Univ Michigan, Michigan Med, Dept Pediat Pediat Neurol, Ann Arbor, MI 48109 USA

[5] Ann & Robert H Lurie Childrens Hosp Chicago, Div Neurol, Epilepsy Ctr, Chicago, IL 60611 USA

[6] Northwestern Feinberg Sch Med, Dept Pediat, Chicago, IL USA

[7] Univ Virginia, Dept Neurol, Charlottesville, VA USA

[8] Harvard Med Sch, Boston, MA 02115 USA

[9] Boston Childrens Hosp, Div Epilepsy & Clin Neurophysiol, Dept Neurol, Boston, MA USA

[10] Univ Texas Austin, Div Pediat Neurol, Dept Neurol, Dell Med Sch, Austin, TX 78712 USA

[11] Oregon Hlth & Sci Univ, Dept Pediat, 3181 Sw Sam Jackson Pk Rd, Portland, OR 97201 USA

[12] Oregon Hlth & Sci Univ, Dept Neurol, Portland, OR 97201 USA

[13] George Washington Univ, Dept Neurol, Childrens Natl Hlth Syst, Washington, DC USA

[14] George Washington Univ, Sch Med, Washington, DC USA

[15] Emory Univ, Sch Med, Dept Pediat, Emory Childrens Ctr, Atlanta, GA USA

[16] Epilepsy Fdn, Landover, MD USA

[17] Seattle Childrens Res Inst, Ctr Integrat Brain Res, Seattle, WA USA

[18] Univ Washington, Dept Pediat, Seattle Childrens Hosp, Washington, DC USA

[19] Univ Washington, Dept Neurol, Seattle Childrens Hosp, Washington, DC USA

[20] Univ Calif San Francisco, Dept Neurol, UCSF Benioff Childrens Hosp, San Francisco, CA USA

[21] Univ Calif San Francisco, Dept Pediat, UCSF Benioff Childrens Hosp, San Francisco, CA USA

[22] Depaul Univ, Dept Hist, Coll Liberal Arts & Social Sci, Chicago, IL 60604 USA

[23] Montefiore Med Ctr, Saul Korey Dept Neurol, 111 E 210th St, Bronx, NY 10467 USA

[24] Albert Einstein Coll Med, Bronx, NY 10467 USA

[25] Childrens Hosp Philadelphia, Div Neurol, Philadelphia, PA 19104 USA

[26] Univ Penn, Dept Neurol, Perelman Sch Med, Philadelphia, PA 19104 USA

[27] Childrens Hosp Philadelphia, Epilepsy NeuroGenet Initiat, Philadelphia, PA 19104 USA

[28] Childrens Hosp Philadelphia, Dept Biomed & Hlth Informat, Philadelphia, PA 19104 USA

[29] St Josephs Hosp, Dept Neurol, Phoenix, AZ USA

来源：

EPILEPSIA | 2021年 / 62卷 / 01期

关键词：

CHILDHOOD-ONSET EPILEPSY; QUALITY-OF-LIFE; STATUS EPILEPTICUS; INFANTILE SPASMS; ILAE COMMISSION; POSITION PAPER; NEUROLOGY; SEIZURES; CLASSIFICATION; IMPROVEMENT;

D O I：

10.1111/epi.16733

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

Objective Common data elements (CDEs) are standardized questions and answer choices that allow aggregation, analysis, and comparison of observations from multiple sources. Clinical CDEs are foundational for learning health care systems, a data-driven approach to health care focused on continuous improvement of outcomes. We aimed to create clinical CDEs for pediatric epilepsy. Methods A multiple stakeholder group (clinicians, researchers, parents, caregivers, advocates, and electronic health record [EHR] vendors) developed clinical CDEs for routine care of children with epilepsy. Initial drafts drew from clinical epilepsy note templates, CDEs created for clinical research, items in existing registries, consensus documents and guidelines, quality metrics, and outcomes needed for demonstration projects. The CDEs were refined through discussion and field testing. We describe the development process, rationale for CDE selection, findings from piloting, and the CDEs themselves. We also describe early implementation, including experience with EHR systems and compatibility with the International League Against Epilepsy classification of seizure types. Results Common data elements were drafted in August 2017 and finalized in January 2020. Prioritized outcomes included seizure control, seizure freedom, American Academy of Neurology quality measures, presence of common comorbidities, and quality of life. The CDEs were piloted at 224 visits at 10 centers. The final CDEs included 36 questions in nine sections (number of questions): diagnosis (1), seizure frequency (9), quality of life (2), epilepsy history (6), etiology (8), comorbidities (2), treatment (2), process measures (5), and longitudinal history notes (1). Seizures are categorized as generalized tonic-clonic (regardless of onset), motor, nonmotor, and epileptic spasms. Focality is collected as epilepsy type rather than seizure type. Seizure frequency is measured in nine levels (all used during piloting). The CDEs were implemented in three vendor systems. Early clinical adoption included 1294 encounters at one center. Significance We created, piloted, refined, finalized, and implemented a novel set of clinical CDEs for pediatric epilepsy.

引用

页码：198 / 216

页数：19

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