Abstract P1-09-31: Crowdsourcing the collateral damage from breast cancer treatment

INTRODUCTION: Although survivorship research focuses on quality of life after breast cancer treatments, it is usually initiated by providers and focused on previously reported side effects and consequences of treatment. Patients are often reluctant to report side effects they may experience during and after cancer treatment and providers are often reticent to ask. In an effort to explore the patient perspective, the Dr. Susan Love Research Foundation convened a collaboration of advocacy groups to "crowdsource" women’s questions regarding collateral damage from treatment. These concerns will then be incorporated into the Health of Women [HOW] Study, an ongoing, online cohort study of breast cancer open to anyone aged 18 or older. METHODS: Emails to current HOW participants were sent out July 2013 to solicit questions about collateral damage. In October 2013, we undertook the design of a new website landing page for the submission of questions, partnered with other breast cancer advocacy organizations, and began collecting responses. Responses were then categorized to guide questionnaire development. RESULTS: Sixteen breast cancer and other advocacy organizations came together to support this project. Emails to current HOW participants resulted in 1191 responses. The website landing page resulted in an additional 3000 responses. Overall, 16.8% of respondents complained of fatigue, 16.3% of memory problems, 15.7% of anxiety and/or depression, and 14.0% of numbness/neuropathy. Other less frequently reported problems included problems with nail growth, vision, hearing, urinary tract infections, and allergy-like symptoms. CONCLUSION: Through this approach, we received an overwhelming number of responses about collateral damage from treatment. Many of the issues are known side effects, while others are less commonly reported, but debilitating nonetheless. We will next compare responses to previously validated questionnaires, develop a comprehensive collateral damage questionnaire for inclusion in the HOW Study, and generate a report for publication to be distributed to the participants. Citation Format: Susan M Love, Amaka Obidegwu, Christine A Fischetti. Crowdsourcing the collateral damage from breast cancer treatment [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P1-09-31.