FAMILY MEMBER KNOWLEDGE OF CHILDRENS MEDICAL PROBLEMS - THE NEED FOR UNIVERSAL APPLICATION OF AN EMERGENCY DATA SET

Objective. Advances in medical care have led to a growing population o f special needs children who are at risk for suboptimal care when they present to a physician with no previous knowledge of their medical hi story. 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 t o evaluate caretakers' knowledge of their children's chronic medical p roblems and their ability to relate this knowledge to unfamiliar healt h care providers. Methods. Caretaker/child pairs presenting for specia lty visits were surveyed. Questions focused on knowledge of the child' s illness, medicine regime, and how to contact the specialist. Chart r eview confirmed responses of caretakers and provided sociodemographic information. Descriptive statistics and chi(2) were used in data analy sis. Results. Of the 49 caretakers interviewed, 85% were parents, 53% were African-American, and 43% were Caucasian. One-half of the group r eceived 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 orga n system involved or that there was a problem. For children on medicat ions, 29% of caretakers could not provide an accurate list. Name of th e subspecialist and phone number of the subspecialty clinic was unknow n 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 m ay be compounded in emergency situations. The use of some form of inde pendent identification and information set is needed to assure proper treatment of children with special health care needs encountering an u nfamiliar health care provider.