PEDIATRICS Vol. 102 No. 2 August 1998, pp. 367-370
Family Member Knowledge of Children's Medical Problems: The Need for Universal Application of an Emergency Data Set
Received Oct 31, 1997; accepted Feb 23, 1998.
From the * Department of Pediatrics, University of Maryland,
Baltimore, Maryland; and Our Lady of Lourdes Medical Center, Camden,
New Jersey.
Objective. Advances in medical care have led to a growing population of special needs children 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 interventions 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 specialty
visits were surveyed. Questions focused on knowledge of the child's illness, medicine regime, and how to contact the specialist. Chart review confirmed responses of caretakers and provided sociodemographic information. Descriptive statistics and 
2 were used in
data analysis.
Results. Of the 49 caretakers interviewed, 85% were parents, 53% were African-American, and 43% were Caucasian. One-half of the group received medical assistance. 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 accurately 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 independent identification and information set is needed to assure proper treatment of children with special health care needs encountering an unfamiliar health care provider.
Key words: special needs children, emergency data set, chronic illness.
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