Common Data Elements Regarding Social Determinants of Health in Pediatric Epilepsy Research: A Concept Mapping Study

IF 3.2 3区医学 Q2 CLINICAL NEUROLOGY

Pediatric neurology Pub Date : 2025-02-06 DOI:10.1016/j.pediatrneurol.2025.01.025

Laura Kirkpatrick MD , Chethan K. Rao DO , Christopher W. Beatty MD , Sonal Bhatia MBBS , Charuta Joshi MD , Kristina Julich MD , Shital H. Patel MD , Rachit Patil MD , Janelle L. Wagner PhD , Christina Briscoe Abath MD, MEd , Alexandria Melendez-Zaidi MD, PhD , Sara E. Baumann PhD, MPH , Jessica G. Burke PhD, MHS , Qian-Zhou JoJo Yang MD

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引用次数: 0

Abstract

Background

The Pediatric Epilepsy Research Consortium (PERC) Health Equity Special Interest Group (SIG) used Concept Mapping to begin developing Common Data Elements (CDE) about social determinants of health to standardize data collection and facilitate robust evaluation of health disparities in pediatric epilepsy research.

Methods

Concept Mapping is a structured participatory mixed method suited for developing group consensus. PERC members (1) identified social factors that are important to measure in pediatric epilepsy research, (2) sorted factors into meaningful categories, and (3) rated the factors on importance and ease of measurement. The authors applied multidimensional scaling to the sorting data, created spatial point maps, and used hierarchical cluster analysis to define concepts. A bivariate scatterplot was used to explore importance versus ease of measurement to prioritize factors for inclusion. The PERC Health Equity SIG met on three occasions to interpret research findings and finalize a CDE set.

Results

Eighty-one PERC members generated 110 candidate factors. Thirty PERC members completed sorting, and 48 completed rating. The factors grouped into a five-cluster solution: “Household and Neighborhood Resources,” “Family Context,” “Individual Demographics,” “Healthcare Experiences,” and “School.” Sixty-two items were rated with high importance, of which 34 were rated with high ease. The PERC Health Equity SIG decided by consensus to include most items with high importance and high ease ratings, plus selected additional items. The final CDE set consists of 42 items.

Conclusions

Inclusion of CDE in future pediatric epilepsy research will enable researchers to undertake systematic analyses of health disparities.

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来源期刊

Pediatric neurology 医学-临床神经学

CiteScore

4.80

自引率

2.60%

发文量

176

审稿时长

78 days

期刊介绍： Pediatric Neurology publishes timely peer-reviewed clinical and research articles covering all aspects of the developing nervous system. Pediatric Neurology features up-to-the-minute publication of the latest advances in the diagnosis, management, and treatment of pediatric neurologic disorders. The journal''s editor, E. Steve Roach, in conjunction with the team of Associate Editors, heads an internationally recognized editorial board, ensuring the most authoritative and extensive coverage of the field. Among the topics covered are: epilepsy, mitochondrial diseases, congenital malformations, chromosomopathies, peripheral neuropathies, perinatal and childhood stroke, cerebral palsy, as well as other diseases affecting the developing nervous system.