Creation and Evaluation of Standardized Electronic Health Record Templates for Transition of Care in Sickle Cell Disease: A Pilot Study

Authors

• Stephanie Howe Guarino, Thomas Jefferson UniversityFollow
• Mohan Madisetti
• Payal C. Desai
• Akshat Jain
• Kenneth Rivlin
• Jerome A. Osheroff
• Robin Miller, Thomas Jefferson University
• Brandi Campanella
• Sophie Lanzkron, Thomas Jefferson UniversityFollow
• Julie Kanter

Document Type

Article

Publication Date

10-24-2025

Comments

This article is the author’s final published version in Journal of Sickle Cell Disease, Volume 2, Issue 1, 2025, Article number yoaf037.

The published version is available at https://doi.org/10.1093/jscdis/yoaf037. Copyright © The Author(s) 2025.

Abstract

Objective The objective of this pilot project was to create a standardized Transition Note in the electronic health record (EHR) to facilitate clinician communication during the transition process from pediatric to adult care for youth with sickle cell disease (SCD). Methods Using a modified Delphi process, consensus was reached among 78 member centers from the National Alliance of Sickle Cell Centers (NASCC) on the essential health data elements for a standardized EHR Transition Note. Templates were created in 2 different EHR systems and piloted at 2 SCD centers. Perceived clinician acceptability, appropriateness, and feasibility were assessed using the AIM-IAM-FAM measures and quality with the GQS (ranges 1.0-5.0). Results Consensus was reached for the inclusion of 126 discrete elements in the development of a standardized SCD EHR Transition Note including SCD complications, treatments, medical and social history, and health maintenance results. Use of templates among clinicians (N = 4) proved to be acceptable (mean 4.5), appropriate (mean 4.6), and feasible (mean 4.4). The overall mean clinician GQS score was 5.0. Conclusion The Transition Note templates developed under this pilot are currently undergoing larger scale testing and evaluation, but preliminary data indicates the templates are usable and useful. User guides will be created for the integration of these templates into the EHR systems at other SCD centers. Interoperability between different EHR systems and dynamic data pulls from the medical record to automate the population of data fields are viewed as areas for future work to both reduce the burden of manual data entry and to facilitate adoption.

Recommended Citation

Guarino, Stephanie Howe; Madisetti, Mohan; Desai, Payal C.; Jain, Akshat; Rivlin, Kenneth; Osheroff, Jerome A.; Miller, Robin; Campanella, Brandi; Lanzkron, Sophie; and Kanter, Julie, "Creation and Evaluation of Standardized Electronic Health Record Templates for Transition of Care in Sickle Cell Disease: A Pilot Study" (2025). Cardeza Foundation for Hematologic Research. Paper 97.
https://jdc.jefferson.edu/cardeza_foundation/97

Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 License.

Language

English