Family Member Knowledge of Children’s Medical Problems: The Need
for Universal Application of an Emergency Data Set
Carol L. Carraccio, MD*; Karen S. Dettmer, MD*; M. Lynne duPont, MD*; and Alfred D. Sacchetti, MD‡
ABSTRACT. Objective. Advances in medical care have led to a growing population of special needs chil-dren who are at risk for suboptimal care when they present to a physician with no previous knowledge of their medical history. This risk may be amplified in the emergency department setting when time-sensitive inter-ventions must be initiated without immediate access to consultants or past records. Our purpose in this study was to evaluate caretakers’ knowledge of their children’s chronic medical problems and their ability to relate this knowledge to unfamiliar health care providers.
Methods. Caretaker/child pairs presenting for spe-cialty visits were surveyed. Questions focused on knowl-edge of the child’s illness, medicine regime, and how to contact the specialist. Chart review confirmed responses of caretakers and provided sociodemographic informa-tion. Descriptive statistics andx2were used in data anal-ysis.
Results. Of the 49 caretakers interviewed, 85% were parents, 53% were African-American, and 43% were Cau-casian. One-half of the group received medical assis-tance. The mean age of the children was 55 months. Responses showed that 53% of caretakers were unable to provide their children’s specific diagnoses. Of these, one half could provide a lay diagnosis whereas the remaining one half could only identify the organ system involved or that there was a problem. For children on medications, 29% of caretakers could not provide an accurate list. Name of the subspecialist and phone number of the subspecialty clinic was unknown by 25% of caretakers. No child wore medical identification jewelry.
Conclusions. Caretakers are not always able to accu-rately relay vital information on their child’s essential medical needs, a problem that may be compounded in emergency situations. The use of some form of indepen-dent iindepen-dentification and information set is needed to as-sure proper treatment of children with special health care needs encountering an unfamiliar health care provider. Pediatrics 1998;102:367–370;special needs children, emer-gency data set, chronic illness.
P
rogressive medical advances have produced a dramatic reduction in early mortality among children with many severe medical and surgi-cal diseases. As a result there now exists a steadily growing population of children with special health care needs worldwide. The most recent estimates from the National Health Interview Survey on Child Health revealed that 31% or almost 20 million chil-dren in the United States have one or more chronic conditions.1The complex or unusual nature of some of these complaints can place children at risk when they present for episodic or emergency care to a health care provider unfamiliar with either their his-tory or their disease state. Under these conditions the accompanying family member or guardian becomes the only source of medical information or education. This situation is amplified in the emergency depart-ment setting when time-sensitive interventions must be initiated without immediate access to consultants or past records.This study was undertaken to evaluate the medical knowledge of family members or guardians of chil-dren with chronic medical problems and their ability to relate this knowledge to unfamiliar health care providers.
METHODS
Interviews were conducted from a convenience sample of care-takers bringing children to one of four subspeciality clinics at the University of Maryland Medical Center, an urban tertiary hospital (Fig 1). Family members and guardians were questioned before a routine visit at the cardiology, endocrinology, hematology/oncol-ogy, or neurology clinics. Only children who were established patients with chronic medical problems were enrolled. While waiting to be seen by the physician, caretakers were approached by one of two of the authors and asked to participate in a survey in accordance with Internal Review Board protocol. After in-formed consent, each caretaker was asked a series of questions relating to their understanding of their child’s medical problem (Table 1). The questions were read verbatim to insure that the two interviewers were consistent in their approach to obtaining infor-mation from caretakers. The use of some form of medical identi-fication jewelry was noted on the interview form. The interviewer also estimated whether the caretaker was capable of providing sufficient information for a health care provider, unfamiliar with the patient’s history or medical problem, to be able to treat the child in a medical emergency. Medical records of patients were reviewed by the same interviewer to determine the accuracy of the caretaker’s responses and to gather sociodemographic informa-tion. Twenty (41%) of the charts were reviewed by both interview-ers to assess interrater reliability.
Descriptive statistics were used to define the study sample. Data were categorized and analyzed byx2.awas set at 0.05 for
level of significance.
From the *Department of Pediatrics, University of Maryland, Baltimore, Maryland; and ‡Our Lady of Lourdes Medical Center, Camden, New Jersey.
This work was presented in abstract form at the Eastern Society for Pediatric Research on March 2, 1997 and the poster session of the Ambulatory Pediatric Association on May 2, 1997.
Received for publication Oct 31, 1997; accepted Feb 23, 1998.
Reprint requests to (C.L.C.) University of Maryland, Department of Pedi-atrics, Rm N5W56, 22 S Greene St, Baltimore, MD 21201.
RESULTS
All families asked agreed to participate. A total of 49 caretakers were interviewed, the majority of which were parents (Table 1). Demographic analysis revealed 53% of patients were African-American and 43% Caucasian, with 50% of all patients receiving medical assistance. The mean age of the study chil-dren was 55 months (range, 1–241 months). Inter-view responses revealed that 26 (53%) of the caretak-ers could not provide their child’s specific diagnosis. Of these, 26% could provide a lay diagnosis, 25% could only identify the organ system involved, and 2% simply knew their child had a problem. Twenty-seven children were on medications but 8 (29%) of the caretakers could not name all of the child’s med-ications. One caretaker carried a list of medications but confessed she did not carry the list at all times. Subspecialist and contact number could be provided by only 12 (25%) of the caretakers. Nineteen percent knew the name of the subspecialty clinic but did not know the phone number or how to contact the clinic. Six percent could provide no information at all con-cerning these questions. Several caretakers had busi-ness cards at home but did not routinely carry them. Interviewers judged caretakers to be unable to ex-plain the child’s diagnosis to a nonspecialist health care provider in 30% of cases. Interrater reliability for determining the correctness of verbal responses when compared with information in the medical record and assignment of these responses to catego-ries was 92%. No child wore any form of medical identification jewelry.
DISCUSSION
Children with special health care needs comprise a growing portion of the pediatric population. Like all children, they will require emergency or episodic care.2Not infrequently this care will be delivered by a health care provider unfamiliar with the patient’s medical history. Reynolds et al3noted that up to 24% of children presenting to an urban pediatric emer-gency department have one or more chronic medical conditions. The subset of children with special health care needs who have unusual or highly technical requirements is also growing. Many of these children have rare problems that may be unfamiliar to any practitioners aside from subspecialty providers. It is unrealistic to expect any physician to be aware of all the latest developments in the treatment of every possible pediatric problem, placing these children at an additional disadvantage when treated by an un-familiar health care provider. A further complication results from the fact that the majority of pediatric
patients present to the emergency department dur-ing evendur-ing and nighttime hours when immediate access to records or consultations is limited.4,5
When children with special health care needs present to unfamiliar providers it is the child’s care-taker who must provide the medical history. In cases of extremely rare problems or those with atypical therapies, the caretaker may also be expected to ed-ucate the providers concerning the child’s problems. This study indicates that reliance on caretakers to provide essential medical information may place a child at risk for suboptimal treatment when they present with other than minor illnesses and injuries. Without the necessary information and faced with a time-sensitive decision, a health care provider may not deliver the appropriate treatment to a child. One-half of the caretakers interviewed could not provide a specific diagnosis for their child’s illness and al-most one third could not provide an accurate list of medications. In an emergency situation this informa-tion deficit could not be readily resolved because 25% were unable to provide either the name of the subspecialist or phone number of the clinic treating their child.
The problem may be even greater than is evident in this study. By interviewing caretakers at the sub-speciality clinic, we may have selected out a subset who are more compliant with their child’s care and possibly also more knowledgeable. It is extremely concerning that 6% of caretakers could not provide information on their subspecialist or clinic despite the fact they were in the subspeciality clinic.
None of the children in the study wore any med-ical identification jewelry such as medic alert brace-lets. Use of such an identification mechanism has recently been recommended by the Emergency Med-ical Services for Children, National Task Force on Children with Special Health Care Needs.6 The American College of Emergency Physicians in con-sultation with members of the American Academy of Pediatrics developed the Emergency Data Set for Children with Special Health Care Needs. This con-cise data sheet is designed to summarize a child’s relevant medical history and alert any health care provider to essential information for initial stabiliza-tion and treatment. The Appendix contains an exam-ple of a data set form for a child with a special health care need. A system combining the medical identifi-cation jewelry and a central emergency data set re-pository is currently under development.
From this study it is clear that there exists a need for pediatricians caring for children with chronic medical problems to provide some mechanism of identifying their patients to unfamiliar health care providers. For children with unusual medical prob-lems, there is also a need to provide some back-ground and stabilization information to assist emer-gency providers, regardless of their background. Fig 1.Interview survey.
TABLE 1. Caretaker Composition
Parent 82.5%
Grandparent 12.5%
Unrelated 5%
Reliance on caretakers to assume these roles may not be sufficient.
This study was designed to identify only
require-ments of their child than many physicians. These caretakers are certainly able to supply the informa-tion that any health care provider would need to treat their child. Unfortunately, they cannot guaran-tee that they will be immediately available to provide essential information on their child in every emer-gency situation and even these children should be protected with some form of medical identification jewelry and emergency data set. Technologic ad-vances have made it possible to develop a comput-erized version of the wearer’s health status in a new dog tag that is currently being tested by the military.7 Who should initiate the use of medical identifica-tion jewelry and complete the emergency data set has not been determined. The primary pediatrician, with input from the subspecialist, would seem to be the most appropriate health care provider to main-tain an emergency data set system.
CONCLUSIONS
Caretaker knowledge of medical problems in chil-dren with special health care needs may not be
suf-ficient to assure proper care of a child treated by an unfamiliar health care provider. Use of medical iden-tification jewelry and an emergency data set for chil-dren with special health care needs can help to pro-vide more informed management of these children.
REFERENCES
1. Newachek PW, Taylor WR. Childhood chronic illness: prevalence, se-verity, and impact.Am J Public Health. 1992;82:364 –371
2. Sacchetti A, Gerardi M, Barkin R, et al. Emergency data set for children with special needs.Ann Emerg Med. 1996;28:324 –327
3. Reynolds S, Desquin B, Uyeda A, Davis T. Children with chronic conditions in a pediatric emergency department.Pediatr Emerg Care. 1996;12:166 –168
4. Krauss BS, Harakel T, Fleisher GR. The spectrum and frequency of illness presenting to a pediatric emergency department.Pediatr Emerg Care. 1991;7:67–71
5. Kunkel N, Rackoff WR, Katolik L, Ohene-Frempong K. Utilization of a pediatric emergency department by patients with sickle cell disease.
Pediatr Emerg Care. 1994;10:79 – 82
6. EMSC Task Force on Children with Special Health Care Needs. EMS for children: recommendations for coordinating care for children with spe-cial health care needs.Ann Emerg Med. 1997;30:274 –280
7. Gunby P. Test of new medical dog tag with civilian potential.JAMA. 1998;279:99 –100
DOI: 10.1542/peds.102.2.367
1998;102;367
Pediatrics
Carol L. Carraccio, Karen S. Dettmer, M. Lynne duPont and Alfred D. Sacchetti
Universal Application of an Emergency Data Set
Family Member Knowledge of Children's Medical Problems: The Need for
Services
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DOI: 10.1542/peds.102.2.367
1998;102;367
Pediatrics
Carol L. Carraccio, Karen S. Dettmer, M. Lynne duPont and Alfred D. Sacchetti
Universal Application of an Emergency Data Set
Family Member Knowledge of Children's Medical Problems: The Need for
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