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Family member knowledge of children's medical problems: the need for universal application of an emergency data set
C L Carraccio1, K S Dettmer, M L duPont
1Department of Pediatrics, University of Maryland, Baltimore, Maryland 21201, USA.
Insights
Many caretakers struggle to recall critical medical information for their children with special health care needs. This knowledge gap poses risks, especially in emergencies, highlighting the need for better information systems.
Area of Science:
- Pediatrics
- Health Services Research
Background:
- Growing population of children with special health care needs (CSHCN) requires effective care transitions.
- Suboptimal care risk increases with unfamiliar healthcare providers lacking medical history.
- Emergency settings amplify risks due to time-sensitive interventions and limited access to records.
Purpose of the Study:
- Evaluate caretaker knowledge of CSHCN's chronic conditions.
- Assess caretakers' ability to communicate medical information to new providers.
Main Methods:
- Surveyed caretaker/child pairs at specialty visits.
- Collected data on illness knowledge, medication regimens, and specialist contact information.
- Utilized chart reviews for verification and sociodemographic data; employed descriptive statistics and chi2 analysis.
Main Results:
- 53% of caretakers could not provide specific diagnoses for their children.
- 29% could not accurately list medications; 25% didn't know specialist contact details.
- No children were identified as wearing medical identification jewelry.
Conclusions:
- Caretakers often lack the ability to accurately convey essential medical information for CSHCN.
- This deficit poses significant risks, particularly in emergency situations.
- Independent identification and information sets are crucial for ensuring proper care for CSHCN by unfamiliar providers.
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 chi2 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.