Patient-centered pathology reports for breast cancer care: Interim results of a randomized pilot study.

Abstract

e19157 Background: Receiving a new cancer diagnosis event is a daunting event, quickly followed by complex decision-making between patients and care teams. In order for patients to fully engage in shared decision-making with their providers, they must have access to understandable, patient-centered information that empowers them to take an active role. Yet cancer pathology reports currently target providers and are marred by complex medical terminology. To address this gap, we designed and piloted patient-centered pathology reports (PCPRs) for breast cancer surgical pathology. We hypothesized that PCPRs would result in patients having greater pathology knowledge and decisional self-efficacy. Methods: PCPRs were designed with continuous guidance from breast surgeons, pathologists, and patient advocates with the goal of providing a supplemental tool to translate standard pathology reports to layman’s terms for patients. PCPRs were built into the electronic medical record and tested for quality and accuracy over a 4-month period. Participants were recruited from the clinical practices of two breast surgeons and randomized to receive either the PCPR and standard pathology report or standard pathology report alone. Patients were surveyed at baseline and one month after to assess their breast cancer knowledge and ratings of confidence (scale 1-5) and decisional self-efficacy (DSE) for treatment decision-making (scale 0-100). Results: Of a planned 40 pilot patients, 30 have been enrolled, randomized (20 standard report patients, 10 PCPR patients), and have follow up data. Evaluation of patient knowledge showed that compared with the control group, patients who received a PCPR had similar knowledge of the important elements of their report (p = 0.10-p = 0.69) with greater specificity for those report elements. Confidence in their diagnosis slightly favored PCPR recipients (confidence rating mean 4.00 vs. 3.77 for control patients, p = 0.67). Patients receiving the PCPR had better DSE immediately after receipt of the pathology report than standard report patients (DSE 96.0 vs. 82.2, respectively, p = 0.05) with a more attenuated DSE difference one month later (DSE 87.3 vs. 79.2, respectively, p = 0.35). Conclusions: This interim analysis suggests that providing breast cancer patients with patient-centered pathology reports may contribute to an improved ability to engage in shared decision-making. Confirming these results with complete pilot data could inform a larger multicenter study to validate their effectiveness in clinical cancer care.