Emergency Information Forms for Children With Medical Complexity: A Qualitative Study.

OBJECTIVES: Children with medical complexity (CMC) are at risk for poor outcomes during medical emergencies. Emergency information forms (EIFs) provide essential medical information for CMC during emergencies; however, they are not widely used. We sought to identify factors related to optimal care for CMC to inform development of EIFs for CMC. METHODS: We interviewed 26 stakeholders, including parents of CMC, healthcare providers, health information technology, and privacy compliance experts. We inquired about barriers and facilitators to emergency care of CMC, as well as the desired content, structure, ownership, and maintenance of an EIF. Audio recordings were transcribed and analyzed inductively for common themes using thematic analysis techniques. RESULTS: Providers identified problems with documentation and poor caregiver understanding as major barriers to care. Parents reported poor provider understanding of their child's condition as a barrier. All groups reported that summary documents facilitate quality care. Recommended content included demographic/contact information, medical history, medications, allergies, advance directives, information about the patient's disease, and an action plan for anticipated emergencies. Twenty-three participants indicated a preference for electronic EIFs; 19 preferred a Web-based EIF that syncs with the medical record, with paper or portable electronic copies. Although 13 participants thought that EIFs should be patient owned to ensure availability during emergencies, 19 expected medical providers to create and update EIFs. CONCLUSIONS: Stakeholders interviewed reported a preference for Web-based, sync-capable EIFs with portable copies. Emergency information forms could be maintained by providers but owned by patients to optimize emergency care and align with the concept of the medical home.

Emergency Information Forms for Children With Medical Complexity: A Simulation Study.

BACKGROUND: Emergency information forms (EIFs) have been proposed to provide critical information for optimal care of children with medical complexity (CMC) during emergencies; however, their impact has not been studied. The objective of this study was to measure the impact and utility of EIFs in simulated scenarios of CMC during medical emergencies. METHODS: Twenty-four providers (12 junior, 12 experienced) performed 4 simulations of CMC, where access to an EIF was block randomized by group. Scenario-specific critical action checklists and consequential pathways were developed by content experts in simulation and pediatric subspecialists. Scenarios ended when all critical actions were completed or after 10 minutes, whichever came first. Two reviewers independently evaluated the video-recorded performances and calculated scenario-specific critical action scores. Performance in scenarios with and without an EIF was compared with Pearson's χ(2) and Mann-Whitney U tests. Interrater reliability was assessed with intraclass correlation. Each provider rated the utility of EIFs via exit questionnaires. RESULTS: The median critical action score in scenarios with EIFs was 84.2% (95% confidence interval [CI], 71.7%-94.1%) versus 12.5% (95% CI, 10.5%-35.3%) in scenarios without an EIF (P < .001); time to completion of scenarios was shorter (6.9 minutes [interquartile range 5.8-10 minutes] vs 10 minutes), and complication rates were lower (30% [95% CI, 17.4%-46.3%] vs 100% [95% CI, 92.2%-100%]) with EIFs, independent of provider experience. Interrater reliability was excellent (intraclass correlation = 0.979). All providers strongly agreed that EIFs can improve clinical outcomes for CMC. CONCLUSIONS: Using simulated scenarios of CMC, providers' performance was superior with an EIF. Clinicians evaluated the utility of EIFs very highly.