What Are Patients Really Telling Us? Comparison of Survey Responses and the Medical Record in Cardiovascular Surgical Patients

Background Little information exists on the quality of the data obtained in follow-up surveys in cardiac surgical patients. We designed a questionnaire to capture relevant cardiac surgical outcomes in adult patients and validated it against similar variables in the medical record. Methods Questionnaires were mailed to 200 consecutive patients who underwent cardiac operations and had a complete cardiovascular consultation more than 1 month after hospital dismissal. The sensitivity and specificity for each question was compared with the electronic medical record. Results The median age at operation was 62.5 years (range, 19.6 to 91.1 years). The mean age of responders (n = 149, 75%) was 69 ± 13 years, and 93% lived independently in their own home. Responders and nonresponders were similar. Sensitivity and specificity of self-reporting (95% confidence intervals) included atrial fibrillation, 74% (60% to 85%) and 94% (87% to 98%); stroke, 89% (52% to 100%) and 97% (93% to 99%); bleeding requiring hospitalization, 57% (18% to 90%) and 96% (92 to 99%); permanent pacemaker implantation, 95% (75% to 100%) and 100% (97% 100%); and coronary stenting, 93% (66% to 100%) and 99% (96% to 100%). Conclusions Patients were reasonably accurate in reporting (high specificity) when asked about a medical condition that was not present, but were not always aware of documented medical issues (moderate sensitivity). When asked about procedures, responses were highly sensitive, specific, and accurate. Patients had difficulty discriminating among complex invasive procedures. Clinical investigators must be aware of the limitations of the data obtained from surveys, and positive responses should be confirmed.