Incomplete event documentation in medical records of lung transplant recipients

Context-The medical record is frequently used in clinical studies as a source of information on illness events experienced by patients; however, it may be incomplete.Objective-To estimate the extent of incompletely documented acute bronchopulmonary events in a transplant clinic medical record at a single university medical center, using home monitoring data.Design, Setting, and Subjects-Trends in daily home monitoring data were compared to contemporaneous medical record documentation at 150 different times in 30 lung transplant recipients over 45 subject-years.Outcome Measure-Proportion of acute bronchopulmonary illness events documented in clinic medical record.Results-By using home monitoring data in a new way, we found that 40% of events actually suffered by lung recipients could not be ascertained to have occurred from the clinic medical record alone. All missed encounters occurred away from the transplant clinic, and involved hospitalizations and telephone prescriptions.Conclusions-Using the clinic medical record alone to identify acute bronchopulmonary events in lung transplant recipients may result in missing 40% of events. This has important ramifications for studies relying on the medical record for acute event ascertainment in lung transplantation and possibly other chronic diseases.