title: Parent and emergency physician comfort with a system of on-line emergency-focused medical summaries for infants with significant cardiac disease.
abstract: 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.
authors.affiliation: Department of Pediatrics, School of Medicine, Amplatz Children's Hospital, University of Minnesota, Minneapolis, MN, USA. pyles001@umn.edu
authors.forename: Lee A
authors.initials: LA
authors.lastname: Pyles
authors.forename: Margaret
authors.initials: M
authors.lastname: Scheid
authors.forename: Michael P
authors.initials: MP
authors.lastname: McBrady
authors.forename: Kathryn H
authors.initials: KH
authors.lastname: Hoyman
authors.forename: Molly
authors.initials: M
authors.lastname: Hanse
authors.forename: Kathy
authors.initials: K
authors.lastname: Jamrozek
authors.forename: Jessica C
authors.initials: JC
authors.lastname: Hannan
authors.forename: Charles M
authors.initials: CM
authors.lastname: Baker
authors.forename: Susan J
authors.initials: SJ
authors.lastname: Duval
authors.forename: James H
authors.initials: JH
authors.lastname: Moller
authors.forename: Claudia I
authors.initials: CI
authors.lastname: Hines
mesh_terms: D003142:Communication; D003258:Consumer Behavior; D003422:Critical Care; D004636:Emergency Service, Hospital; D005260:Female; D019538:Health Care Surveys; D006331:Heart Diseases / Q000151:congenital* / Q000503:physiopathology; D006801:Humans; D007223:Infant; D020407:Internet; D008297:Male; D011368:Professional-Family Relations; D012720:Severity of Illness Index; D014481:United States