Forgotten clientele: A systematic review of patient-centered pathology reports

Abstract

Context Patient portals, designed to give ready access to medical records, have led to important improvements in patient care. However, there is a downside: much of the information available on portals is not designed for lay people. Pathology reports are no exception. Access to complex reports often leaves patients confused, concerned and stressed. We conducted a systematic review to explore recommendations and guidelines designed to promote a patient centered approach to pathology reporting. Design In consultation with a research librarian, a search strategy was developed to identify literature regarding patient-centered pathology reports (PCPR). Terms such as “pathology reports,” “patient-centered,” and “lay-terms” were used. The PubMed, Embase and Scopus databases were searched during the first quarter of 2023. Studies were included if they were original research and in English, without date restrictions. Results Of 1,053 articles identified, 17 underwent a full-text review. Only 5 studies (≈0.5%) met eligibility criteria: two randomized trials; two qualitative studies; a patient survey of perceived utility of potential interventions. A major theme that emerged from the patient survey/qualitative studies is the need for pathology reports to be in simple, non-medical language. Major themes of the quantitative studies were that patients preferred PCPRs, and patients who received PCPRs knew and recalled their cancer stage/grade better than the control group. Conclusion Pathology reports play a vital role in the decision-making process for patient care. Yet, they are beyond the comprehension of most patients. No framework or guidelines exist for generating reports that deploy accessible language. PCPRs should be a focus of future interventions to improve patient care.