Accuracy of endoscopic databases for assessing patient symptoms: comparison with self-reported questionnaires in patients infected with the human immunodeficiency virus

Background: Endoscopic databases are increasingly used for clinical researc h, but their validity as research instruments has not been assessed. We com pared the accuracy of endoscopic indications recorded in an endoscopic data base with patient symptom questionnaires. Methods All patients infected with the human immunodeficiency virus referre d to the outpatient gastroenterology practice were prospectively evaluated using recognized symptom questionnaires. For patients undergoing esophagoga stroduodenoscopy, the procedure indications recorded in the endoscopic data base and the patient's self-reported symptom scores were compared. Results: Ninety-three patients were evaluated. The symptoms of nausea/vomit ing, diarrhea, and anorexia were highly predictive for the presence of thes e symptoms on the patient questionnaires. The symptoms of dyspepsia/abdomin al pain did not predict well the presence of these symptoms on the question naire. Patients reported frequent and severe symptoms that were not recorde d as indications for the procedures. The overall agreement (kappa statistic ) was highly variable, from slight (kappa = 0.07 for anorexia) to moderate (kappa = 0.44 for diarrhea). Conclusions: Endoscopic indications are variably associated with self-repor ted symptom scores. These findings raise concerns about using some endoscop ic database indications as accurate representations of patients' symptoms. Until performance characteristics of a given database are known, symptom-or iented research should use validated questionnaires whenever possible.