Reasons for and against participation in studies of medicinal therapies for women with breast cancer: a debate

BACKGROUND: A special challenge for research studies of breast cancer among females is low patient participation rates. We compiled this systematic review to identify reasons why women with, or at high risk of, breast cancer do or do not participate in medicinal studies of breast cancer. METHOD: A systematic literature search in the databases Cochrane Library, EMBASE, Medline, Pascal Biomed, ACP Journal Club and CINAHL, as well as searches through reference lists of relevant texts, was performed. RESULTS: Of 39 relevant full texts, ultimately, nine studies (1 qualitative, 8 quantitative) were included after applying the inclusion criteria. Despite a lack of data material, it was possible to identify various factors influencing women's willingness to participate in medicinal studies and group them into three categories: person-related, study-related, and physician-related. CONCLUSION: Reasons for or against participation in studies of medicinal therapies by women with, or at high risk of, breast cancer are multi-dimensional, and should be considered when planning such studies to garner higher participation rates. For a more comprehensive picture of factors that affect participation, further studies in this field are recommended.