Parent and Emergency Physician Comfort with a System of On-Line Emergency-Focused Medical Summaries for Infants with Significant Cardiac Disease
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- Pyles, L.A., Scheid, M., McBrady, M.P. et al. Matern Child Health J (2011) 15: 534. doi:10.1007/s10995-010-0593-8
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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.
KeywordsChildren with special health care needsEmergency information formEmergency preparednessCongenital heart disease
Emergency medical management plans for children with special health care needs (CSHCN) improve care outside of the Medical Home for these children [1, 2]. This hypothesis is the basis for advocacy for emergency planning for CSHCN by the American Academy of Pediatrics (AAP), the American College of Emergency Physicians (ACEP) and the federal maternal and child health bureau emergency medical services for children (EMSC) Program. CSHCN are those children who have a need (or potential need) for health care resources above a usual level and a risk for unique emergencies that challenge emergency health care providers . In 1999, the AAP and ACEP jointly formulated a policy to advocate for emergency plans for CSHCN [4, 5]. The policy established a standardized format, dataset and implementation plan for CSHCN based on the ACEP/AAP emergency information form (EIF). The Federal EMSC program, through its Partnership for Children, funded AAP promotion of the EIF. The Emergency Medical Services for Children 5 year plan of 2001–2005 advocated formation of model emergency care plans for CSHCN, directing that emergency plans be formulated for at least four groups of CSHCN . Children with heart disease were one of the suggested groups. Because of this, we established the Minnesota (now Midwest) Emergency Medical Services for Children Information System (MEMSCIS) to house EIF’s for infants and young children with significant cardiac disease. The MEMSCIS project has a goal of establishing a culturally sensitive, family-centered methodology for the emergency planning process for the CSHCN with cardiac disease and measuring effectiveness of this process. This report describes the experiences testing the hypotheses (1) that EIF preparation and use in the MEMSCIS program improves the comfort level of parents of CSHCN with an emergency encounter and with their child with special needs, (2) that EIF use and emergency contingency preparation would improve the parent’s perception of the comfort levels of the emergency providers, (3) that emergency physicians would report a good level of satisfaction with the use of MEMSCIS. Our experience developing a website to host the ACEP/AAP EIF has been previously described and will be briefly reviewed . This report represents the first widespread implementation of the EIF.
EIF data classes
Name, address, physicians, pharmacy, local hospital, emergency contacts
Diagnoses, procedures, medications, allergies
Baseline physical exam, neurologic status, vital signs, technologic devices, lab studies
Home telephone, electricity, running water, oxygen, etc.
DPT, Hep, HIB, IPV, MMR, Varicella, (Synagis, TB Status)
Common presenting problems and suggested treatments, family remarks, advanced directive status
Infants and children under age 2 years were enrolled in a randomized non-blinded study by nurse coordinators at the three participating cardiac centers to evaluate the study objectives. Infants and children under age 2 years eligible for the study were those following a cardiac operation or being treated for heart failure or arrhythmia. The inclusion criteria were chosen to obtain a group of children with equivalent severity of chronic illness. Exclusion criteria included (1) discharge with a tracheostomy or home ventilator, (2) balloon dilation of pulmonary stenosis outside of the neonatal period, and (3) device/operative closure of atrial septal defect. There were too few children with these conditions and their condition was either too straightforward or too complex to allow matched comparison, based on previous investigation of numbers of children with various congenital heart diseases .
Children were randomized between control and a MEMSCIS-enrolled study group with a coin flip performed by a single person otherwise uninvolved in subject enrollment. Enrollment was from 9/26/02 to 9/11/04, and patients were tracked for an additional 5½ months after closure of enrollment (to 2/28/05). Informed consent was obtained from parents using a protocol approved by Committees for the Protection of Human Subjects of the University of Minnesota Children’s Hospital and Children’s Hospitals and Clinics of Minnesota (two separate Institutional Review Boards). The Health Insurance Portability and Accountability Act of 1996 (HIPAA) consent was added in 2003. The parents were surveyed after a 12–18 month observation period. The primary endpoint was the change in parent level of comfort and parent’s perception of level of comfort of the hospital and pre-hospital providers over the course of the study.
Parents received an initial survey and at least one follow-up regarding their perceptions of their own comfort level and the parent’s perception of emergency provider’s comfort with emergency care of their child with a cardiac anomaly. Prior to randomization, parents were surveyed. As part of the consent process, they were asked to consent to one of three levels of access to MEMSCIS: (a) password access for the parents and primary cardiologist only, (b) password access for all of the cardiologist’s practice group, (c) access for any person able to supply the first and last name of the child with an EIF via ‘Break-the-Glass’. The parents were then informed of the randomization result and either helped to complete an EIF as study families or the child’s baseline clinical and contact data was gathered and those control families surveyed in follow-up without any other study contact. Study parents were educated regarding access to the website, password security, and how to make an emergency department aware of the EIF. Parents were given a plastic card with the MEMSCIS website address and logo and were asked to keep a paper copy of the up-to-date EIF. These parents were trained to inform emergency departments that their child was a participant in the MEMSCIS program at the time of presentation for emergency care. The credit card-sized MEMSCIS identification tag was attached to a diaper bag or stroller and carried by the parent. An intensive educational effort was undertaken to inform emergency providers of the MEMSCIS Program in the three children’s hospital sites involved in the study.
Data Collection and Analysis
The following information from each emergency department visit was obtained: usage or attempted usage of the EIF, presenting complaint, ED tests and interventions, discharge diagnosis, and disposition of patient. Parents were surveyed via telephone after the emergency and with written surveys at yearly intervals. The yearly surveys have been analyzed but only the first year surveys obtained at 12–18 month follow-up are the subject of this report. Emergency physicians were surveyed after the emergency encounter in which the EIF was used.
Survey responses consisted of yes/no responses or Likert Scale responses to statements scored on a 1–5 scale as follows: “Strongly Disagree” (1), “Disagree Somewhat”, “No Effect”, “Agree Somewhat”, and “Strongly Agree” (5). Parent surveys were designed to determine the parent’s level of comfort with the emergency interaction. The parent’s perception of the pre-hospital (ambulance) and hospital emergency provider’s level of comfort and preparation to care for their child with a cardiac history and special health care needs was determined. Comfort was considered a general sense of ease with a situation; they were asked to agree or disagree with statements such as “I find that my family and I are more comfortable with my child’s special condition because I have a written health history”. Parents were also asked to assess the provider’s level of comfort with their child. The list of questions asked of the parents is displayed in Table 3. Primary cardiac anomaly and primary procedure were determined according to the hierarchy of the Pediatric Cardiac Care Consortium, .
Survey face validity refers to understandability of the survey questions. Content validity refers to the extent to which the survey answers the pertinent questions of the research. Survey face and content validity was evaluated by staff from the National EMSC Data Analysis Resource Center as well as MEMSCIS grant and MN Emergency Medical Services for Children Resource Center staffs plus the MEMSCIS grant advisory committee. Construct validity, an estimate of the extent to which the survey information agrees with published findings, was evaluated by considering satisfaction surveys such as the Agency for Health Research Quality Consumer assessment of Healthcare Providers and Systems and the work of Demeris [13, 14.] The initial set of questions were constructed through a nominal group process among the investigators. The survey was piloted with a small group of subjects who were then surveyed no further. Reliability was assessed by administering the follow-up survey to control patients. Similarly, emergency physicians who used the EIF were surveyed. This provider survey was assessed for face validity but not piloted. Reliability was not assessed. Informed consent was also obtained from the emergency physicians. Data analysis included tabulation of survey data and significance testing using Wilcoxon Rank Sum Distribution Tests that treated the Likert responses as ordinal variables. Subgroup analysis was performed with unpaired t-tests. Correlation analysis of the initial survey responses includes experimental factor analysis and determination of Cronbach’s alpha that describes construct validity of a set of survey questions.
Primary cardiac diagnoses
Tetralogy of fallot
Ventricular septal defect
Hypoplastic left heart syndrome
Pulmonary atresia with intact ventricular septum
One-hundred-eighty-nine emergency visits occurred including 88 visits by control patients and 101 by study patients. Thirteen visits occurred in which the EIF was used by physicians. Three visits occurred in which EIF use was requested by parents and refused by emergency providers but no matched pairs of surveys are available. The reasons for this according to parents were lack of familiarity with MEMSCIS, disinterest, and the physician feeling that the emergency summary was not necessary. Only one of 189 ED visits represented a return visit within 48 h. One child died in the ED, a control patient who presented in cardiac arrest. Fifteen children were transported for a total of 23 times by ambulance; one ambulance transport in ten instances, twice for one child in four instances and five ambulance calls in one instance. The numbers of EIF uses and ambulance uses were too small to allow analysis of the impact of EIF use on survey responses; only the impact of the MEMSCIS program was assessed. No difference in survey responses was discernable in relation to ED use by the child.
Satisfaction survey results for parents of infants and young children with heart disease
Change in study
Change in control
Change in study vs. change in control
p change in study vs. change in control
1. I find that I and my family are more comfortable with my child’s special condition because I have a written health history (n = 59/30/29)
3.48 ± 0.91
3.37 ± 0.74
0.69 ± 1.17
0.22 ± 1.25
0.47 ± 0.32
2. I find that pre-hospital emergency personnel are uncomfortable with my child’s specific condition
3.03 ± 0.69
2.86 ± 0.74
−.03 ± 1.16
0.10 ± 1.01
0.14 ± 0.28
3. I find that the comfort level of pre-hospital personnel improves when they find that I have a written health history from my doctor
3.15 ± 0.72
3.21 ± 0.57
0.67 ± 1.0
0.04 ± 1.04
0.63 ± 0.27
4. I find that hospital emergency personnel are uncomfortable with my child’s specific condition
2.90 ± 0.76
2.55 ± 0.95
−.20 ± 1.06
0.28 ± 1.27
−0.47 ± 0.31
5. I find that the comfort level of hospital personnel improves when they find that I have a written health history from my doctor
3.28 ± 0.54
3.36 ± 0.78
0.76 ± 0.93
−.07 ± 1.02
0.83 ± 0.27
6. In GENERAL, I find that pre-hospital personnel are well-prepared to care for my child with special health care needs
3.26 ± 0.86
3.41 ± 1.02
0.42 ± 1.06
−.10 ± 1.21
0.52 ± 0.29
7. In GENERAL I find that hospital personnel are well-prepared to care for my child with special health care needs
4.07 ± 1.03
4.28 ± 1.07
0.17 ± 1.04
−.62 ± 1.42
0.79 ± 0.33
Comfort improvement scale (sum of items 1, 3 and 5)
9.37 ± 2.59
9.96 ± 1.81
2.2 ± 2.16
0.18 ± 2.88
2.02 ± 0.70
Preparedness perception scale (sum of items 6, 7, reverse (2), reverse (4))
11.28 ± 2.29
12.28 ± 2.90
0.93 ± 2.51
−1.1 ± 3.12
2.03 ± 0.75
Table 3 shows the matched results (n = 30 study and n = 29 control) for families who completed both pre- and post-intervention surveys. Additional families completed only a pre (66) or post (12) survey and those results are similar but not included in Table 3. Additional forecasting survey items were included only in the initial survey. One-hundred responses were recorded for these questions as follows: I plan to allow my local EMS to keep a copy of my child’s Emergency Information Form; 51 strongly agreed for a Likert response of 4.24 ± 0.90 (SD), I plan to update the form regularly with my cardiologist and family doctor: 56 strongly agreed for a Likert response of 4.28 ± 0.96.
Table 3 shows the results of baseline study and control average Likert responses for items 1–7 and then the various changes in value and comparisons. Three items (numbers 3, 5 and 7) show a definite change for study subjects vs. control by Wilcoxon rank-sum distribution test. These items measured improvement in comfort for pre-hospital and hospital providers plus the parental assessment of competency of the hospital providers. Three additional items (numbers 1, 4 and 6) show nearly significant change (p = 0.1–0.14) with the Wilcoxon test. The only item that remained solidly unchanged was question number 2 that assessed the parental assessment of pre-hospital provider comfort with emergencies of CSHCN. The composite scales showed statistically significant changes in study compared with control subject responses (Table 3).
Items 2 and 4 that asked parents to assess hospital and pre-hospital provider levels of comfort specifically with their child were unchanged between control and test subjects, before or after MEMSCIS study participation.
The families that had used an ambulance showed an increased agreement with the statement that the pre-hospital providers were uncomfortable. Survey Item 2 states “I find that pre-hospital emergency personnel are uncomfortable with my child’s specific condition”. Control families showed a decrease in Likert scale average of −0.13 units vs. +0.58 unit increase for the families who had used an ambulance, (p = 0.043), indicating an increase in the assessment of uncomfortability.
There was no change in test–retest response of control parents. Emergency physicians (9 of 13) were surveyed after the emergency visits using an evaluation that employed an identical Likert Scale for evaluation of emergency physician comfort level with emergencies of CSHCN. Since the physicians were only surveyed once, no change in response could be measured. The data including comments indicate a good impression of MEMSCIS. Physicians uniformly responded positively about the value of a written health history on themselves and hospital personnel. A positive impression of hospital preparedness for CSHCN was documented in these surveys. There was a neutral result regarding pre-hospital personnel comfort and preparedness. One physician noted in the medical record “The child is enrolled in the cardiac patient’s on-line information for child with special needs and this is very helpful to me. I was actually able to pull this up via the internet, as mom was uncertain exactly what the child’s diagnosis and medications were”. Another physician noted in the follow-up survey “Most important was ability to talk to peds cardiologist for this specific problem not directly related to heart condition”. The Emergency physician’s contact with the cardiologist was facilitated by phone numbers in the EIF in MEMSCIS. The responding emergency providers all strongly agreed or agreed somewhat that their comfort level had been improved. A major barrier to implementation of MEMSCIS was low usage in the ED (13 uses, 3 attempted uses, 77 non-uses and 89 total ED visits by CSHCN infants with heart disease enrolled in the study arm of the investigation). Emergency physicians were unaware of the project or voiced concern regarding accuracy of the information. No negative feedback was received from any emergency physician who actually used an EIF. No pre-hospital provider accessed the electronic EIF or reviewed a paper copy.
Parents and those health care workers involved in promotion of the EIF have believed it to be helpful in an emergency. Our study documents an improvement in parental comfort level in dealing with the emergencies of their child in association with enrollment in an emergency planning program. Parental attitudes generally changed in enrolled families but not the control families.
The on-line emergency information form represents a natural progression that began with wallet cards that were used to assemble medical summaries in emergency medical services for children (EMSC) Demonstration Grants. EMSC grants to states such as New Mexico, Wisconsin, Ohio and then a Ohio/Kentucky/West Virginia consortium have employed wallet cards or one page summaries which were given to parents [16, 17]. Rhode Island EMSC introduced the concept of an electronic web-based system to organize patient summaries (PEDISTAT) . Sherman and Capen described a program to streamline and standardize access to care for asthmatics with history of life-threatening status asthmaticus, the “Asthma Red Alert Program”.  This system educated the parents, primary care providers, emergency medical services, schools and emergency physicians regarding the need for early access to aggressive acute treatment of the child’s asthma and provided the parents with a written documentation of the severe asthma. This program may have decreased asthma deaths although severity of presenting illness was not stratified. In Wisconsin, the Child Alert program has been developed to utilize local grass roots efforts in an Emergency Preparedness for CSHCN program. In the District of Columbia, Adirim and coworkers prepared emergency plans using the EIF in conjunction with MedicAlert .
Utilization of a medical summary such as that presented by the electronic EIF in MEMSCIS represents an intermediate step towards the US Department of Health and Human Services Goal of interoperability of electronic health records (EHR’s). The need for easily available and portable EHR’s has been underscored by natural and man-made disasters that have occurred since the advent of the EIF in 1999. Health care providers in Houston accessed the Louisiana Immunization Registry to help in the transition of care for children displaced to Houston . Emergency planning can also be implemented with the wallet cards as used in the early New Mexico EMSC project several years ago. Medical Informaticians are currently advocating use of a standard format for a medical summary created from or as a part of an electronic health record .
This report describes initial testing of validity and reliability of a parent survey plus test–retest results for the survey after some parents and children were enrolled in an emergency preparedness program. The limitations of this study include the use of a parent survey that had not been separately evaluated for reliability. However, the lack of change in responses in the control group does indicate good test–retest reliability. Our Cronbach’s alpha for the three items 1, 3, and 5 in Table 3 (Comfort Improvement Scale) indicate good reliability of those questions in assessing parent improvement in comfort. The items 2, 4, 6, and 7 (Preparedness Perception Scale) measured overall parental adjustment and the responses were not nearly as greatly impacted by the MEMSCIS program. The factor analysis and correlation analysis showed that those questions possessed a different latent construct from questions 1, 3, 5. Content validity had been evaluated as was noted in methods. Other limits include the focus on the parent’s perception of provider comfort levels and the low response rates, especially of the providers. The provider survey can only be considered a pilot test. The feeling that it would be difficult to obtain pre-post testing from emergency providers led to the decision to focus on the parental impressions of provider attitudes. A low rate of EIF usage was observed and a moderate rate of paired response to pre- and post-test surveys was obtained. The encouraging finding for pediatric providers is that responses by study families who did not use the EIF in an emergency suggest a positive effect of the MEMSCIS program in improving the outlook of the families regarding their child with special health care needs. Bias may have been introduced due to timing of parental survey responses with respect to ED visits. This was not analyzed but is felt not to be a major issue in view of the lack of change in control parent responses.
This report describes impact of implementation of a system of on-line EIF’s known as Midwest Emergency Medical Services for Children Information System (MEMSCIS) on the assessment of parent and emergency provider comfort with emergency planning. The operational experience garnered in this study confirms the impression that a local infrastructure facilitates successful implementation of an EIF system. This will likely be observed until such time as full EHR interoperability is accomplished and EHR’s are fully implemented including usage of problem lists and medication lists. The local infrastructure has also been utilized for paper-based EIF systems such as the Wisconsin Child Alert program . Even after EHR interoperability becomes commonplace, there may be a need for a repository of emergency-focused summary information that will be separate from the EHR. This will meet the public’s desire to limit a child’s information that can become commonplace knowledge. Yet to be addressed in the common platform EHR, is the desire of different healthcare institutions to limit access to information to those providers with privileges at the given institution. In addition, the issues remains of “too much” or disorganized information. In 2001 Schneider noted that 13 of 16 Personal Health Records (initiated by patients) lacked organization to make them useful for emergencies . These Personal Health Records were felt to not be helpful to critical care physicians. Also, only 16 of 66 who had advertised a service to the public were still in business 1 year later. MEMSCIS offers practical solutions to these evolving issues.
In summary, implementation of the MEMSCIS system for on-line management of ACEP/AAP Emergency Information Forms in this patient group resulted in improved parent level of comfort and parent perception of hospital emergency provider level of comfort and competence that seems to be independent of EIF usage in an emergency. The use of the MEMSCIS system improved the feeling of comfort even for parents who do not utilize the EIF in an emergency. The inference is that family resiliency and return of a feeling of normalcy was promoted by the MEMSCIS Program or perhaps by the interaction with the nurses administering the program. A multi-center trial of use of MEMSCIS to manage pediatric emergencies could answer the question of whether the findings from this study could be generalized to emergency care of other Children with Special Health Care Needs. MEMSCIS provides a glimpse into the possibility and usefulness of a national registry of emergency summaries that would provide support for emergency and disaster care for Children with Special Health Care Needs.
The authors acknowledge the assistance of Dr. Jeffrey Schiff who provided consultation in the development of the www.memscis.com website and Molly Hanse and Jennifer Piccolo-Fisher who provided administrative assistance for the project. The authors also gratefully acknowledge the technical assistance from National EMSC Data Analysis Resource Center including Drs. Michael Dean and Michael Ely who provided invaluable assistance with start-up of the project and NEDARC help with survey design. The assistance of Sue Duval, Ph.D. and Gabriella Vasquez, MS who provided statistical consultation is also acknowledged. The authors recognize the support of staff of Fairview Health Systems and Children’s Hospitals of Minnesota data warehouses. This project was supported by US DHHS MCHB Grants H34MCC0091 and H34MC02544.