Abstract PO4-16-12: Patient initiated centricity towards improved communication, side effect management and follow-up care by Real World Evidence Survey from patients for patients – Preview of the Breast BRIDGister Platform
Authors: Stuewe Cornelia , Wirtz Ralph , Gress Christa , Schmidt Lena , Schweighart Veronika , Eidt Sebastian , Schumacher Claudia , Habraschka Julia , Lehmann Heidi , Schuere Katrin 
Published: May 2024

Abstract
Background
Treatment adherence is crucial for outcome improvement. Still up to 50% of patients interrupt e.g. endocrine treatment or other effective treatment choices due to side effects or miscommunication. Reasons may include limited time spent for patient information in daily routine and the intrinsic barriers to frankly tell the truth to the attending physicians. Therefore, a patient initiated survey has been compiled to comprehensively address all clinical, diagnostic and critical aspects of importance for patients by decentral data capture from patients at home via smart devices in a pseudonymized & interactive fashion to refocus on challenges regarding patients needs, fears and wishes to support evidence based statistical analysis of Real World Data.
Materials and Methods
Establishing a cloud-based IT Platform enabling nationwide, decentral data entry using Climedo clinical trial software tools without the need of any commercial app utilities and therefore obeying GDPR conform standards to create an interconnected online platform integrating 36 interconnected surveys comprising &gt;1.200 singular questions has been set up between 2020 and 2022 based on patients content elaboration & wishes. The questionnaires address all Real World experiences e.g. at initial diagnosis, during primary treatment and all subsequent lines as well as side effect management with complementary medicine and follow up care realities. After 100 patients a preplanned statistical analysis has been performed to evaluate the feasibility of the patient oriented ePRO approach and demonstrate relevance of proof-of-concept results before entering international trial expansion. Descriptive analysis by Excel as well as Correlation analysis; Chi square and Partitioning tests using the SAS JMP® 9.0.0 software were performed.
Results
Despite in depth complexity &gt; 85% of patients completed the whole survey. Age distribution of the pilot cohort revealed comparably younger patient age (28% between 30-39 years, 40% between 40-49 years, 24% between 50-59 and 10% being above 60 years) and dominance of Triple Negative Patients (~39%) participating the online survey in the pilot cohort. 97% of patients were treated in certified breast centers (50% in larger centers of bigger towns,15% in central clinics, 23% in university sites, 5% in local hospitals and 7% at office based doctors). Interestingly, 25% of patients did not or only partially understand their diagnosis and upcoming treatment. Time spent for communicating initial breast cancer diagnosis was less than 10 minutes for 25% of patients, while 13% did not remember. Exclusively one treatment option was discussed with 86% of patients. 78% have been informed about their initial breast cancer diagnosis in personal meetings, while 21% were informed by phone calls. 37% of patients had been informed about their patient rights. At preplanned interim analysis 38% of patients were lymphnode positive and 6% metastasized at initial diagnosis. 56% of patients were satisfied with their guideline conform follow-up-care, while 42% did pay for additional follow up care on their own. 85% of patients wished to have a risk-adopted, more individualized follow-up care.
Conclusion
Despite complexity and lengthiness &gt; 85% of patients did complete the survey. There is an apparent need to have more time for initial confrontation with diagnosis and treatment options. Patients are frequently not informed about alternative treatment options as well as patient rights. Patients frequently feel under pressure in their life threatening situation and suffer substantial lack of information as well as appropriate personal communication. Patient centricity should focus on elaborated communication and information systems that support treatment decision acceptance and adherence. Further details analysis will become available in upcoming subanalysis of the Breast BRIDGister platform survey.
Citation Format: Cornelia Stuewe, Ralph Wirtz, Christa Gress, Lena Schmidt, Veronika Schweighart, Sebastian Eidt, Claudia Schumacher, Julia Habraschka, Heidi Lehmann, Katrin Schuere. Patient initiated centricity towards improved communication, side effect management and follow-up care by Real World Evidence Survey from patients for patients – Preview of the Breast BRIDGister Platform [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-16-12.