How patients describe their diagnosis compared to clinical documentation

Objectives: To explore how patients describe their diagnoses following Emergency Department (ED) discharge, and how this compares to electronic medical record (EMR) documentation. Methods: We conducted a cohort study of patients discharged from three EDs. Patients completed questionnaires regarding their understanding of their diagnosis. Inclusion criteria: adult ED patients aged 18 and older seen within the last seven days. We independently compared patient-reported new diagnoses following discharge to EMR-documented diagnoses regarding diagnostic content (identical, insignificantly different, different, not enough detail) and the level of technical language in diagnostic description (technical, semi-technical, lay). Results: The majority of participants (n=95 out of 137) reported receiving a diagnosis and stated the given diagnosis. Of those who reported their diagnosis, 66%, were females (n=62), the average age was 43 (SD 16), and a fourth (n=24) were Black and 66% (n=63) were white. The majority (84%) described either the same or an insignificantly different diagnosis. For 11% the patient-reported diagnosis differed from the one documented. More than half reported their diagnosis using semi-technical (34%) or technical language (26%), and over a third (40%) described their diagnosis in lay language. Conclusions: Patient-reported diagnoses following ED discharge had moderate agreement with EMR-documented diagnoses. Findings suggest that patients might reproduce verbatim semi-technical or technical diagnoses they received from clinicians, but not fully understood what the diagnosis means for them.