Abstract: Defining “Survivorship”: A Qualitative Comparison of Content in Patient- and Physician-Facing Literature

◆ Brittnie S. Peck, University of Wisconsin–Superior
◆ Jonathan B. Dellinger, University of Wisconsin–Whitewater

The present study is a qualitative comparison of content defining and characterizing breast cancer “survivorship” in patient- and physician-facing literature. This study highlights the distinct differences in how survivorship is discussed in medical literature, versus the reality of survivorship for breast cancer patients and survivors, and how that reality is represented in patient-facing resources. Implications include the importance of incorporating the “Voice of the Lifeworld” (Mishler, 1990) in developing best practices for patient-centered breast cancer-related care. Ten patient-facing breast cancer resource websites and ten medical literature journal articles focused on defining and characterizing various components of breast cancer survivorship were compared and contrasted. Survivorship in medical literature regarding breast cancer patient care is defined largely in terms of the side-effects of cancer treatment and symptom management. Alternatively, patient-facing literature concerning survivorship focuses on a more holistic notion of quality of life. More specifically, these patient-facing resources provide guidance on recovering aspects of one’s life that were enjoyable prior to cancer diagnosis, when possible, acceptance of this loss when recovering the loss is not possible, and on achieving a renewed sense of normalcy in light of the permanent physiological and psychological changes incurred as a result of breast cancer care. Breast cancer health care providers overly focused on the symptoms and side effects of breast cancer treatment may overlook some of the ways breast cancer has impacted a patient’s everyday life, and thus overlook the importance of addressing some of these factors directly in medical interactions as important contributors to quality of life. For example, findings show that medical literature concerning sexual dysfunction as a result of breast cancer treatment focus on the risk of early onset menopausal symptoms and infertility, but not on sexual dysfunction in terms of navigating intimacy. Alternatively, patient-facing literature largely concerns the challenges sexual dysfunction-related symptoms pose to achieving sexual intimacy with sexual and romantic partners, and includes guidance on how to manage barriers to sexual intimacy, as well as how to achieve a new sense of normalcy within romantic and sexual partnerships. This includes guidance on intimacy communication within close relationships as a means for overcoming barriers to maintaining satisfying sexual relationships. If physicians and other breast cancer health care providers are to adequately address factors contributing to breast cancer survivorship, the relationship between survivorship and quality of life in terms of achieving a state of living that is satisfying must be addressed directly in medical interactions. Given the dearth of representation of the “Voice of the Lifeworld” in medical literature concerning breast cancer survivorship, we expect this dynamic also characterizes the predominance of medical interactions. We suggest that incorporating the “Voice of the Lifeworld” more effectively into the medical community’s definition and treatment of survivorship in the medical literature will contribute to the adoption of these necessary conversations as part of best practices and result in more patient-centered care.