Abstracts

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

Abstract number : 1.126
Submission category : 13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year : 2024
Submission ID : 1327
Source : www.aesnet.org
Presentation date : 12/7/2024 12:00:00 AM
Published date :

Authors :
Presenting Author: Laura Kirkpatrick, MD – UPMC Children's Hospital of Pittsburgh

Christopher Beatty, MD, MAS – Nationwide Children's Hospital, The Ohio State University
Charuta Joshi, MD – University of Texas Southwestern
Kristina Julich, MD – Dell Medical School
Shital Patel, MD – Duke University
Rachit Patil, MD – Rhode Island and Hasbro Children's Hospital
Janelle Wagner, PhD – Medical University of South Carolina
Jessica Burke, PhD, MHS – University of Pittsburgh
Sara Baumann, PhD, MPH – University of Pittsburgh
Jojo Yang, MD – University of North Carolina

Rationale: Common data elements (CDE) standardize data collection. However, CDE related to social determinants of health are lacking in pediatric epilepsy research. The Pediatric Epilepsy Research Consortium (PERC) Health Equity Special Interest Group (SIG), (consisting of experts in pediatric epilepsy research) used Concept Mapping to propose CDE to inform further scientifically rigorous study of health disparities in pediatric epilepsy.

Methods: Concept Mapping is a structured, participatory mixed method that is uniquely suited for developing group consensus and exploring perceived similarities and differences between concepts. PERC members were asked to: 1) identify social factors that are important to measure in pediatric epilepsy research, 2) sort factors into categories, and 3) rate the factors’ importance and ease of measurement. We applied multidimensional scaling to the sorting data, created spatial point maps, and used hierarchical cluster analysis to define concepts. We then used the rating data to create a bivariate scatter-plot of importance versus ease of measurement to prioritize factors for inclusion in the CDE set. The PERC Health Equity SIG met on 3 occasions to interpret research findings and reach consensus on a final set of CDE.


Results: 81 PERC members generated a list of 110 candidate social factors. Next, 30 PERC members completed the sorting activity and 48 completed the rating exercises. The 110 factors grouped into 5 clusters: “Household & Neighborhood Resources,” “Family Context,” “Individual Demographics,” “Healthcare Experiences,” and “School.” The final concept map displayed in Figure 1 provides a visual illustration in which the relative distance between the points (factors) represents perceived similarities and differences. Sixty-two items were rated with high importance, including 34 rated with higher ease of measurement such as “preferred language of parent(s)/caregiver(s)” and “ability to participate in telemedicine,” and 28 rated with lower ease such as “patient experiencing discrimination or other ostracizing situations in healthcare or from providers.”

The PERC Health Equity SIG decided by consensus to include most items with high importance and high ease ratings, as well as selected items with lower importance and/or ease such as “access to transportation” and “household food security.” The final CDE list, consisting of 43 items, is detailed in Table 1.


Conclusions: This research represents a critical step in conceptualizing what common data elements (CDE) related to social determinants of health are needed in pediatric epilepsy research. Inclusion of the identified CDE in future pediatric epilepsy research will enable researchers to undertake systematic analyses of health disparities. The participation of PERC members and the Concept Mapping method ensures a high degree of confidence that the results reflect group consensus and are relevant to the field of pediatric epilepsy.


Funding: 5K12NS098482-07 to Laura Kirkpatrick

Health Services (Delivery of Care, Access to Care, Health Care Models)