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. 2025 Apr:165:87-95.
doi: 10.1016/j.pediatrneurol.2025.01.025. Epub 2025 Feb 6.

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

Laura Kirkpatrick  1 , Chethan K Rao  2 , Christopher W Beatty  3 , Sonal Bhatia  4 , Charuta Joshi  5 , Kristina Julich  6 , Shital H Patel  7 , Rachit Patil  8 , Janelle L Wagner  9 , Christina Briscoe Abath  10 , Alexandria Melendez-Zaidi  11 , Sara E Baumann  12 , Jessica G Burke  12 , Qian-Zhou JoJo Yang  13
Affiliations

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

Laura Kirkpatrick et al. Pediatr Neurol. 2025 Apr.

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.

Keywords: Common Data Elements; Epilepsy; Health disparities; Health equity; Pediatric epilepsy; Social determinants of health.

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Conflict of interest statement

Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Laura Kirkpatrick reports financial support was provided by Child Neurologist Career Development Program. Sara Baumann reports financial support was provided by National Institutes of Health Fogarty International Center. Charuta Joshi reports a relationship with Praxis Precision Medicines Inc that includes consulting or advisory. Charuta Joshi reports a relationship with Jazz Pharmaceuticals Inc that includes funding grants. Charuta Joshi reports a relationship with Longboard Pharmaceuticals Inc that includes consulting or advisory. Charuta Joshi reports a relationship with Zogenix Inc that includes consulting or advisory. Charuta Joshi reports a relationship with Aquestive Therapeutics that includes consulting or advisory. Christopher Beatty reports a relationship with Acadia Pharmaceuticals Inc that includes consulting or advisory. Kristina Julich reports a relationship with Zeva Therapeutics that includes consulting or advisory. Kristina Julich is on the Editorial Board of Pediatric Neurology. Rachit Patil is on the Editorial Board of Pediatric Neurology. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Figures

FIGURE 1.
FIGURE 1.
Cluster map. Each point on the map reflects a statement from the brainstorming data. The position of each point, including its distance from other points, reflects its relative similarity or difference from each other point based on the sorting data. The points were grouped into clusters based on the sorting data. The clusters were labeled in the interpretation session. The color version of this figure is available in the online edition.
FIGURE 2.
FIGURE 2.
Go-Zone plot. Each point on the plot reflects a statement from the brainstorming data. The x axis reflects importance ratings from 0 to 5. The y axis reflects ease of measurement ratings from 0 to 5. The plot is divided into quadrants with the upper right-hand quadrant reflecting high importance and high ease. The color version of this figure is available in the online edition.
FIGURE 3.
FIGURE 3.
Pattern matching display of relative importance and ease of measurement ratings for clusters. Each cluster is represented by two points connected by a line. The point on the left reflects its cluster-level rating of importance. The point on the right reflects its cluster-level rating on ease of measurement. The color version of this figure is available in the online edition.
FIGURE 4.
FIGURE 4.
Candidate social factors included in Common Data Elements. This figure displays the proposed data element, its importance/ease quadrant on the Go-Zone plot, its importance rating, its ease of measurement rating, and its cluster. The color version of this figure is available in the online edition.
FIGURE 5.
FIGURE 5.
Candidate social factors omitted from the Common Data Elements. This figure displays proposed data elements that were ultimately not included in the Common Data Element set, each item’s importance/ease quadrant on the Go-Zone plot, its importance rating, its ease of measurement rating, and its cluster. The color version of this figure is available in the online edition.
See this image and copyright information in PMC

References

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