Abstract PO-042: Engaging diverse patients and families in the visualization of cancer-related patient-reported outcomes
Authors: Elkins Wendi L. , Padilla Neda R. , Cutts Dani , Jonsson Mattias , Johnson Michelle , Corbie-Smith Giselle , Cykert Samuel , Reeve Bryce B. , Bennett Antonia V. , Rosenstein Donald L. , Sanoff Hanna , Samuel Cleo A. 
Published: December 2020

Background: Black patients with cancer report worse symptom burden and management relative to Whites. Use of electronic patient-reported outcomes (ePROs) have been linked to improved cancer-related symptom management, with potential to address inequities in symptom management. Visualization of ePRO symptom data is a critical component of ePRO development; however, engagement of diverse patient and family stakeholders in the visualization of ePRO data has been limited. As part of the Symptom and Healthcare Access Reporting and Evaluation (SHARE) study, we engaged diverse stakeholders in the development of an ePRO tool. Herein, we describe our stakeholder engagement process, as well as feedback and recommendations for optimizing visualization of ePRO data with an equity prioritization lens. Methods: We leveraged a multi-step, mixed-methods, community-engaged research approach to solicit input from diverse patients in active treatment (n= 30 Black; n=49 White) and members of cancer-focused community advisory boards (n=1 Asian; n=8 White). Stakeholders provided feedback on two versions of the ePRO symptom report (Prototype 1[original version] and Prototype 2 [modified version based on initial stakeholder feedback]) through an iterative process. Feedback was obtained via surveys, individual interviews, and group meetings. Results: Compared with White patients, Blacks reported more challenges in using and understanding Prototype 1 of the symptom report. Community advisory board members shared similar concerns regarding ease of use of Prototype 1. In particular, patients and members noted that graphical legends and axes were difficult to interpret, making it difficult to identify which symptoms were worsening or improving. Prototype 2 of the ePRO symptom report incorporated feedback, such as increasing font and graph sizes, combining related symptoms (e.g., nausea and vomiting) into a single graph, and inclusion of color-graded graph schemes corresponding to symptom severity (e.g., green=no symptom; orange=moderate severity), which facilitated ease of use for patients with limited graphical literacy. In comparing Prototype 1 to Prototype 2, community advisory board members reported that Prototype 2 was more visually appealing and easier to use and understand. Conclusions: Overall, feedback from diverse patients and community stakeholder groups resulted in the development of a more usable and patient-centered ePRO symptom summary report. Our work highlights the importance and value of engaging diverse stakeholders in the development of ePRO systems, including the visualization of ePRO data, in order to optimize the in the use of ePRO tools for everyone.

Citation Format: Wendi L. Elkins, Neda R. Padilla, Dani Cutts, Mattias Jonsson, Michelle Johnson, Giselle Corbie-Smith, Samuel Cykert, Bryce B. Reeve, Antonia V. Bennett, Donald L. Rosenstein, Hanna Sanoff, Cleo A. Samuel. Engaging diverse patients and families in the visualization of cancer-related patient-reported outcomes [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-042.