1. Parent and Provider Impressions of Emergency Planning for CSHCN; Midwest Emergency Medical Services for Children Information System (MEMSCIS.com) Lee A. Pyles, MD, Kathy Jamrozek, RN, Jessica C. Hannan, RN, Margaret Scheid, RN, MSN, Claudia I. Hines, RN, MSN University of Minnesota Children’s Hospital and Departments of Pediatrics and Emergency Medicine, Emergency Medical Services for Children Resource Center of Minnesota, Children’s Hospitals and Clinics of Minnesota

2. Disclosures No conflicts of interest No conflicts of interest No investigational drugs or devices No investigational drugs or devices Research and Presentation supported by US DHHS MCHB Grants H34MCC0091 and H34MC02544 MCHB EMS for Children Program. Research and Presentation supported by US DHHS MCHB Grants H34MCC0091 and H34MC02544 MCHB EMS for Children Program.

3. Introduction Emergency Information Form is a paper summary of CSHCN clinical history Emergency Information Form is a paper summary of CSHCN clinical history –Demographics –Diagnoses –Procedures –Medications –Precautions –Suggested Treatments –Baseline VS and Physical Exam

4. Introduction EIF / MEMSCIS Data Elements Emergency Information Form is a paper summary of CSHCN clinical history Emergency Information Form is a paper summary of CSHCN clinical history –Demographics –Diagnoses –Procedures –Medications –Precautions –Suggested Treatments –Baseline VS and Physical Exam American Academy of Pediatrics, Committee on Pediatric Emergency Medicine, Preparedness for Children with Special Health Care Needs. Pediatrics 1999;104(4):E53. American Academy of Pediatrics, Committee on Pediatric Emergency Medicine, Preparedness for Children with Special Health Care Needs. Pediatrics 1999;104(4):E53.

5. MEMSCIS Midwest Emergency Medical Services for Children Information System www.memscis.com Midwest Emergency Medical Services for Children Information System www.memscis.com www.memscis.com Web-linked database to store Emergency Information Forms Web-linked database to store Emergency Information Forms Pyles, LA, Hines, C, Patock, M, et al. Development of a Web-based Database to Manage American College of Emergency Physicians/ American Academy of Pediatrics Emergency Information Forms. Academic Emergency Medicine Vol 12 (3) 1-5. March 2005. Pyles, LA, Hines, C, Patock, M, et al. Development of a Web-based Database to Manage American College of Emergency Physicians/ American Academy of Pediatrics Emergency Information Forms. Academic Emergency Medicine Vol 12 (3) 1-5. March 2005.

6. EHR ↔ PHR MEMSCIS is a hybrid electronic health record for providers and personal health record for parents of Children with Special Health Care Needs MEMSCIS is a hybrid electronic health record for providers and personal health record for parents of Children with Special Health Care Needs Unique Features Unique Features –Advice Section –Icon system of data attribution

8. Study 170 (94 study and 76 control) children enrolled in IRB-approved prospective randomized controlled trial from 9/26/02 to 9/11/04 and followed to 2/28/05. 170 (94 study and 76 control) children enrolled in IRB-approved prospective randomized controlled trial from 9/26/02 to 9/11/04 and followed to 2/28/05. Inclusion/Exclusion Inclusion/Exclusion –Children under age two with significant cardiac disease –No ASD device, non-neonatal PS dilation –No trachs, vents

9. Survey Parents surveyed on yearly basis Parents surveyed on yearly basis –Use of MEMSCIS –Comfort with Emergency Situation –Perception of Provider Comfort Ed physician surveyed after ED visit Ed physician surveyed after ED visit Surveys graded with yes/no responses and 5 point Likert Scale to evaluate responses to survey questions Surveys graded with yes/no responses and 5 point Likert Scale to evaluate responses to survey questions Content validity reviewed with National Emergency Medical Services for Children Data Analysis Resource Center (NEDARC) Content validity reviewed with National Emergency Medical Services for Children Data Analysis Resource Center (NEDARC)

10. Results Prior to enrollment in the study, 26 of 105 parents (25%) reported that they kept a written health history for their child Prior to enrollment in the study, 26 of 105 parents (25%) reported that they kept a written health history for their child 91% of parents opted-in for Break-the-Glass access 91% of parents opted-in for Break-the-Glass access 25% of parents performed updates 25% of parents performed updates 70% of updates by study nurses 70% of updates by study nurses 189 ED visits (0.47 ED visits / pt / year) 189 ED visits (0.47 ED visits / pt / year) –101 Study pt –88 control pt

11. Parent Survey: Comfort Level for Emergency Care

12. Parent Assessment of Comfort of Hospital Providers 0.000 1.000 2.000 3.000 4.000 5.000 Likert Scale Baseline Follow-Up Study_Hosp_Prepared Control_Hosp_Prepared ^ p = 0.0283 change in study vs. change in control ^

13. Parent Survey: ED Provider Comfort

14. Hospital Provider Comfort Impression Improvement

15. Parent Assessment of Discomfort of Providers

16. Parent Survey: Prehospital Provider Comfort Level

18. ED Physician Survey

19. Summary Survey reliability was supported by lack of change in pre-post responses in control subjects Survey reliability was supported by lack of change in pre-post responses in control subjects Families who had an EIF reported improved comfort for emergencies Families who had an EIF reported improved comfort for emergencies Families perceived that hospital providers showed an improved comfort level when it was learned that the CSHCN had an EIF Families perceived that hospital providers showed an improved comfort level when it was learned that the CSHCN had an EIF

20. Summary II Families remained neutral when questions asked for a negative response questions Families remained neutral when questions asked for a negative response questions Families described an improvement of their perception of ED provider comfort over the course of the study, if the family had been a study participant but especially if family had used the EIF. Families described an improvement of their perception of ED provider comfort over the course of the study, if the family had been a study participant but especially if family had used the EIF.

21. Summary III Families described an improvement of their perception of pre-hospital provider comfort over the course of the study, if the family had been a study participant. Families described an improvement of their perception of pre-hospital provider comfort over the course of the study, if the family had been a study participant.

22. Conclusions The MEMSCIS program was associated with development of a favorable impression of families for emergency providers. The MEMSCIS program was associated with development of a favorable impression of families for emergency providers. ED visit improved family impression only if the EIF was used. ED visit improved family impression only if the EIF was used. Providers responded favorably to the EIF when used. Providers responded favorably to the EIF when used.