Essential Components of Emergency Care Plans for Medically Complex Pediatric Patients

Key Message : This study aims to gather expertise from multidisciplinary care teams caring for medically complex pediatric patients to develop an electronic emergency care planning document that can be used by patients, families, and healthcare teams. This may inform future development of a more widely applicable emergency care plan.

Abstract:

Background: Advances in medical care have enabled medically complex pediatric patients to live longer, often with frequent hospital encounters and extensive electronic medical records (EMR). Parents have identified disorganized EMRs and time-consuming record review as barriers to care (1). While studies have assessed the benefits of emergency care plans, no standardized forms exist to guide providers in delivering goal-concordant care for medically complex pediatric patients (2). Research is needed to identify essential components of emergency care plans that can be collaboratively developed by families and their trusted medical teams.

Objectives: This study will survey medical providers to identify essential components of concise emergency care plans accessible when acute care is needed.

Methods: This single-site study is conducted at Denver Health. We will disseminate a national survey to medical providers affiliated with the Pediatric Complex Care Organization, soliciting input from multidisciplinary care team members to ensure diverse perspectives and cultural considerations are incorporated. We aim for a 30% response rate. Survey domains include patient-specific care, medical equipment, medications, emergency protocols, implementation challenges, and demographic information. Data will be analyzed using REDCap, focusing on descriptive statistical analysis. Categorical data will be presented through frequencies, percentages, and proportions with 95% confidence intervals. Components with the highest percentage of agreement will be identified to determine the most critical elements for inclusion in emergency care plans.

Results: The study received IRB approval on October 8, 2025. Data collection is ongoing. Final results will be available by January 2026.

Conclusion: Survey results will identify sections to include in emergency care plans, informing the creation of tailored plans for pediatric patients. The ultimate goal is to improve care efficiency, reduce unnecessary interventions and hospitalizations through better information availability, and enhance care continuity across healthcare settings.

References: 1. Pulcini, C., Belardo , Z., Ketterer, T., Zorc J., Mollen, C. “Improving Emergency Care for Children with Medical Complexity: Parent and Physicians’ Perspectives.” Academic Pediatrics, vol. 21, no. 3, 1 Apr. 2021, pp. 513–520, pubmed.ncbi.nlm.nih.gov/32947009/, https://doi.org/10.1016/j.acap.2020.09.006.
2. Lyons, T., Huth, K., Cook, S., et al. “Implementation of an EHR-Based Emergency Information Form for Children with Medical Complexity.” Hospital Pediatrics, vol. 15, no. 9, 4 Aug. 2025, publications.aap.org/hospitalpediatrics/article/15/9/701/203073/Implementation-of-an-EHR-Based-Emergency?autologincheck=redirected, https://doi.org/10.1542/hpeds.2025-008396.