Minnesota — Targeted Issue

Emergency Preparedness for Infants with Significant Heart Disease

March 1, 2001 - Feb. 29, 2004

Based at:: University of Minnesota, School of Medicine

Contacts

Name	Role(s)
Lee A. Pyles, MD	Principal Investigator

If you are interested in connecting with Family Advisory Network (FAN) representatives, please contact the Program Manager to obtain their email or phone number.

Disseminations

Title	Type	Publication/Event	Published/Presented	Identifier	Details
Parent and Emergency Physician Comfort with a System of On-Line Emergency-Focused Medical Summaries for Infants with Significant Cardiac Disease	Research Paper/Publication	Matern Child Health J.	2011	PMID: 20352312	Parent and Emergency Physician Comfort with a System of On-Line Emergency-Focused Medical Summaries for Infants with Significant Cardiac Disease Author(s)/Presenter(s) Pyles LA, Scheid M, McBrady MP, Hoyman KH, Hanse M, Jamrozek K, Hannan JC, Baker CM, Duval SJ, Moller JH, Hines CI Abstract/Description Surveys were developed and administered to assess parental comfort with emergency care for children with special health care needs (CSHCN) with cardiac disease and the impact of a web-based database of emergency-focused clinical summaries (emergency information forms-EIF) called Midwest Emergency Medical Services for Children Information System (MEMSCIS) on parental attitudes regarding emergency care of their CSHCN. We hypothesized that MEMSCIS would improve the parent and provider outlook regarding emergencies of young children with heart disease in a randomized controlled trial. Children under age 2 were enrolled in MEMSCIS by study nurses associated with pediatric cardiac centers in a metropolitan area. Parents were surveyed at enrollment and 1 year on a 5-Point Likert Scale. Validity and reliability of the survey were evaluated. Study nurses formulated the emergency-focused summaries with cardiologists. One-hundred-seventy parent subjects, 94 study and 76 control, were surveyed at baseline and 1 year. Parents felt that hospital personnel were well-prepared for emergencies of their children and this improved from baseline 4.07 ± 1.03 to 1 year 4.24 ± 1.04 in study parents who had an EIF for their child and participated in the program (p = 0.0114) but not control parents. Parents perceived an improved comfort level by pre-hospital (p = 0.0256) and hospital (p = 0.0031) emergency personnel related to the MEMSCIS program. The MEMSCIS Program with its emergency-focused web-based clinical summary improved comfort levels for study parents. We speculate that the program facilitated normalization for parents even if the EIF was not used in an emergency during the study. The MEMSCIS program helps to prepare the family and the emergency system for care of CSHCN outside of the medical home. View On Pub Med

Overview

The goals of this project are to: (1) assemble a group of stakeholders to develop an emergency planning methodology for pediatric cardiac patients based on the ACEP/AAP Emergency Information Form (EIF) and the Minnesota EMSC Resource Center PERK (Planned Emergency Response for Kids) program including the Parent Emergency Information Form (PEIF); (2) develop a website that will link patient EIF and PEIF summaries to a database to allow 24 hour per day/7 day per week access to authorized parents and providers; (3) enroll at least 150 children per year for two years in the Pediatric Cardiac Emergency Preparedness Program; (4) evaluate the efficacy of the Pediatric Cardiac Emergency Preparedness Program by evaluating impact on families, providers, patient outcomes, and resource utilization; (5) enhance the utility of the individual emergency plans by providing linkages to detailed background material related to the patient condition; and (6) expand the utility and cultural sensitivity of the Pediatric Cardiac Emergency Preparedness Program by developing materials for use of the program with the Hmong and Hispanic populations in Minnesota.

Main Contact

Lee A. Pyles, MD

Award Amount

$599,703