Abstract P4-12-08: Accuracy of Patient Self-Reported Breast Cancer Disease Characteristics Compared to the Medical Record in a Trial of the Outcomes4MeDigital Health App
Authors: Steven J Isakoff, Eva Glieberman, Maya Said, Agnes H. Kwak, Emily A. O’Rourke, Amanda Stroiney, Laura Spring, Beverly Moy, Aditya Bardia, Nora Horick, Jeffrey Peppercorn
Journal: Cancer Research (2022)

Abstract Background: Patients’ understanding of their breast cancer (BC) diagnosis is important in improving treatment adherence, shared decision-making, and clinical trial matching. However, studies have reported discrepancies between electronic medical record (EMR) and patient reported information. Using data collected from a pilot study of the Outcomes4Me patient empowerment and clinical trial matching App, we analyzed concordance of patient reported disease characteristics compared to EMR data. Methods: Data was analyzed from a single institution pilot study (NCT04262518) evaluating the feasibility of introducing the Outcomes4Me app into routine BC care. Eligibility included BC patients with any subtype or stage of invasive cancer presenting with a new diagnosis or for follow-up on active therapy. We compared patient reported characteristics within a study specific survey and/or the Outcomes4Me app for stage (metastatic or not metastatic), recurrence history, hormone receptor status, HER2, and surgery history with the data recorded in the EMR. All statistics were descriptive. We conducted the same comparison between patient reported clinical characteristics among real world users of the Outcome4Me app and EMR records downloaded by that cohort of patients. Results: Between June 2020 and December 2020, 107 patients were enrolled. Baseline demographics: 90% White, 4% Black, 3% Asian; 37% with a college degree, and 43% with post college education; 66% hormone positive/HER2-, 20% HER2+, and 13% triple negative BC; 31% were stage 4. Concordance between the survey or App questionnaire and the EMR is shown in the Table. Comparing EMR and survey data, 62% of patients matched on both HER2 and HR status, and 94% of patients matched with the EMR on metastatic and recurrence status. When surgery and treatment information was included with these features, only 57% of patients matched across all these characteristics. Similar concordance was observed between the App questionnaire and EMR. Excluding the 21% of patients reporting “unsure” HER2 status improved the concordance to 85%. Overall concordance of recurrent or metastatic status was higher than for receptor status. Despite the discordance between EMR and patient-reported disease information, 97% of patients reported that they somewhat or strongly understood their cancer diagnosis. A similar pattern of concordance between the App questionnaire and EMR was observed among a real-world cohort of 636 patients using the Outcomes4Me App who provided medical record access. Conclusion: Self report of hormone receptor and HER2 status had limited concordance with the EMR, in contrast to a high degree of accuracy for self-report of metastatic disease. The limited accuracy of self-report suggests a need for improved patient education regarding their cancer characteristics and a need for caution when relying on self-report for clinical trials matching and targeted patient education. The use of a digital platform that integrates self-report with medical record access may help address these critical needs impacting patient empowerment and care. Concordance Between App Questionnaire, Study Survey and EMR (% of patients)Disease Characteristic Matching CriteriaApp v. EMR (n=85)Survey v. EMR (n=107)App Real World Cohort (n=636)HER2 Status73%66%79%HR Status80%85%80%Combined Receptor Status67%62%73%Metastatic Status94%(n=79)97%(n=98)94%Surgery History83%(n=47)95%96%(n=310)Recurrent Status98%(n=48)97%(n=98)98%(n=411)Recurrent/Metastatic Status93%(n=42)94%(n=98)98%(n=411)Receptor/Recurrent Metastatic Status and Surgery History74%(n=33)57%(n=93)70%(n=201) Citation Format: Steven J Isakoff, Eva Glieberman, Maya Said, Agnes H. Kwak, Emily A. O’Rourke, Amanda Stroiney, Laura Spring, Beverly Moy, Aditya Bardia, Nora Horick, Jeffrey Peppercorn. Accuracy of Patient Self-Reported Breast Cancer Disease Characteristics Compared to the Medical Record in a Trial of the Outcomes4MeDigital Health App [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P4-12-08.