GPC Breast Cancer Study
Share Thoughts on Breast Cancer Study
The purpose of the Share Thoughts on Breast Cancer Study is to learn about the experiences of patients after they have been diagnosed with breast cancer in order to improve patient experiences and treatment. We believe that the best way to make improvements in the care patients receive is by learning from cancer patients themselves. A group of nine medical centers, the Greater Plains Collaborative (GPC), is conducting the study. GPC is a federally funded research project for doing large, timely studies to improve medical care. It is funded by the Patient-Centered Outcomes Research Institute (PCORI) and is part of “PCORNet”:The National Patient-Centered Clinical Research Network.
The Share Thoughts on Breast Cancer study began in May 2015 and recruited 1,235 women aged 18 and over who were first diagnosed at one of the participating medical centers with ductal carcinoma in situ or stage I-III breast cancer during January 1, 2013 to May 1, 2014. Recruitment, enrollment, and data collection were done by mail. Participants completed a study questionnaire and informed consent was requested to also obtain information from their medical record. They could participate in the questionnaire part of the study without signing the consent form.
Objectives of the Study
The study generated data on current issues important to breast cancer patients and clinicians such as: patient knowledge about breast reconstruction options, quality of life outcomes of bilateral mastectomy, prevalence and correlates of gene testing, the role of patient preferences and shared decision-making, and correlates of patient experiences of care coordination. The study also generated pilot data for future projects. The study fulfills 3 major milestones of the 18 month long GPC infrastructure development period.