Comparative Effectiveness of a Patient Centered Pathology Report for Bladder Cancer Care

Abstract

Patients have unprecedented access to their medical records. However, many documents, such as pathology reports, may be beyond the health literacy of most patients. We compared the effectiveness of bladder biopsy patient centered pathology reports with standard reports. Local bladder cancer experts reached consensus on the important elements of a bladder biopsy pathology report to inform prognosis and counseling. Patient focus groups identified the patient centered formats and language to convey these elements and constructed a pilot patient centered pathology report. A total of 40 patients undergoing bladder biopsy were block randomized to receive the standard report with or without the patient centered report. We assessed patient self-efficacy, and provider communication and empathy, and tested bladder cancer knowledge at pathology disclosure and 1month later. We compared study groups with descriptive statistics. Experts identified stage, grade and histology as the most important elements of a bladder biopsy pathology report. Patients prioritized 3 themes, including narrative format, tumor stage illustration and risk stratification for recurrence. A total of 39 patients completed initial and followup assessments. Patients with the patient centered pathology report had improved ability to identify cancer stage compared to those with the standard report. Initially 58% of patients with the standard report vs 20% with the patient centered report were unable to describe stage but at followup this incidence was 47% vs 15% (p = 0.02 and 0.03, respectively). Those with the patient centered report also trended toward improved identification of cancer grade. Provider communication trended toward improvement for the patient centered report. Ratings of patient self-efficacy did not differ by report. Patient centered pathology reports are associated with greater patient knowledge about the bladder cancer diagnosis. The reports may aid patient-provider communication. This pilot study may serve as a model for the development of patient centered pathology reports for other cancers.