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First published August 21, 2007 as JAMIA PrePrint; doi:10.1197/jamia.M2134
Journal of the American Medical Informatics Association 2007;14(6):765-771
© 2007 American Medical Informatics Association

A more recent version of this article appeared on November 1, 2007
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Submitted on April 24, 2006
Accepted on July 14, 2007

The Value of Patient Self-Report for Disease Surveillance

Florence T. Bourgeois MD, MPH1*, Stephen C. Porter MD, MPH2, Clarissa Valim ScD, MD3, Tiffany Jackson BS4, E. Francis Cook ScD5, and Kenneth D. Mandl MD, MPH2

Affiliation of the authors: 1 Division of Emergency Medicine, Children's Hospital Boston, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA ; 2 Division of Emergency Medicine, Children's Hospital Boston, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA; Children's Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Boston, MA ; 3 Clinical Research Program, Children's Hospital Boston, Boston, MA; Department of Biostatistics, Harvard School of Public Health, Boston, MA ; 4 Division of Emergency Medicine, Children's Hospital Boston, Boston, MA; 5 Department of Epidemiology, Harvard School of Public Health, Boston, MA

* To whom correspondence should be addressed.

Objective To determine the accuracy of self-reported information from patients and families for use in a disease surveillance system.

Design Patients and their parents presenting to the emergency department (ED) waiting room of an urban, tertiary care children's hospital were asked to use a Self-Report Tool, which consisted of a questionnaire asking questions related to the subjects' current illness.

Measurements The sensitivity and specificity of three data sources for assigning patients to disease categories was measured: the ED chief complaint, physician diagnostic coding, and the completed Self-Report Tool. The gold standard metric for comparison was a medical record abstraction.

Results A total of 936 subjects were enrolled. Compared to ED chief complaints, the Self-Report Tool was more than twice as sensitive in identifying respiratory illnesses (Rate ratio [RR]: 2.10, 95% confidence interval [CI] 1.81-2.44), and dermatological problems (RR: 2.23, 95% CI 1.56-3.17), as well as significantly more sensitive in detecting fever (RR: 1.90, 95% CI 1.67-2.17), gastrointestinal problems (RR: 1.10, 95% CI 1.00-1.20), and injuries (RR: 1.16, 95% CI 1.08-1.24). Sensitivities were also significantly higher when the Self-Report Tool performance was compared to diagnostic codes, with a sensitivity rate ratio of 4.42 (95% CI 3.45-5.68) for fever, 1.70 (95% CI 1.49-1.93) for respiratory problems, 1.15 (95% CI 1.04-1.27) for gastrointestinal problems, 2.02 (95% CI 1.42-2.87) for dermatologic problems, and 1.06 (95% CI 1.01-1.11) for injuries.

Conclusions Disease category assignment based on patient-reported information was significantly more sensitive in correctly identifying a disease category than data currently used by national and regional disease surveillance systems.






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