"Help me figure this out": Qualitative explorations of patient experiences with cancer pathology reports. Issue 1 (January 2021)

• Record Type: Journal Article
• Authors: Austin, Elizabeth J.; Lee, Jenney R.; Bergstedt, Brandelyn; Mitchell, Anita Isler; Javid, Sara H.; Ko, Cynthia W.; Gore, John L.
• Is Part Of: Patient education and counseling. Volume 104:Issue 1(2021)
• Page Start: 40
• Page End: 44
• Publication Date: 2021-01
• Subjects: Patient engagement -- Cancer pathology -- Patient-centered care; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2020.07.020
• Languages: English
• ISSNs: 0738-3991

Abstract

Highlights: The cancer pathology report is a critical tool for decision-making, but is not patient-centered. We held focus groups to understand patient experiences receiving and reviewing pathology reports. Participant experiences with pathology reports were fraught with confusion and variability. Pathology report language and format impact patients' ability to participate in decision-making. More patient-centered approaches to pathology report design are needed. Abstract: Objective: For patients with a new cancer diagnosis, the pathology report is a critical tool to support diagnosis and decision-making, yet they are designed for providers, not patients. We sought to qualitatively explore patients' experiences receiving and interpreting pathology reports for breast and colorectal cancers. Methods: We conducted four focus groups with patients (n = 23) who had received diagnostic or surgical pathology reports for breast cancer, colorectal cancer or polypectomy. Focus groups discussed patients' experiences with pathology reports and recommendations for improving the patient-centeredness of report design. Focus groups were transcribed and thematic analysis was used to explore patient perspectives. Results: Participants described experiences with pathology reports that were fraught with confusion and variability. Three central themes were identified related to how 1) the experience receiving the pathology report, 2) the pathology report language, and 3) the format of pathology reports all influence patient understanding and ability to engage in treatment decision-making. Conclusion: Due to their complex medical language and challenging framing, traditional pathology reports can contribute to the confusion and uncertainty patients experience as they navigate a new cancer diagnosis.