Kamaria L Lee1, Nancy K Janz2, Brian J Zikmund-Fisher1,2,3, Reshma Jagsi4, Lauren P Wallner1,5, Allison W Kurian6, Steven J Katz7, Paul Abrahamse1, Sarah T Hawley1,7,8. 1. Department of Internal Medicine, Division of General Medicine, University of Michigan, Ann Arbor, MI, USA (KLL, BJZ, LPW, SJK, PA, STH). 2. Department of Health Behavior and Health Education, University of Michigan, Ann Arbor, MI, USA (NKJ, BJZ). 3. Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, USA (BJZ). 4. Department of Radiation Oncology, University of Michigan, Ann Arbor, MI, USA (RJ). 5. Department of Epidemiology, University of Michigan, Ann Arbor, MI, USA (LPW). 6. Departments of Medicine and Health Research and Policy, Stanford University, Stanford, CA, USA (AWK). 7. Department of Health Management and Policy, University of Michigan, Ann Arbor, MI, USA (SJK, STH). 8. Veterans Administration Center for Clinical Management Research, Ann Arbor VA Health Care System, Ann Arbor, MI, USA (STH).
Abstract
BACKGROUND: Breast cancer patients' misunderstanding of their systemic cancer recurrence risk has consequences on decision-making and quality of life. Little is known about how women derive their risk estimates. METHODS: Using Los Angeles and Georgia's SEER registries (2014-2015), a random sample of early-stage breast cancer patients was sent surveys about 2 to 3 months after surgery ( N = 3930; RR, 68%). We conducted an inductive thematic analysis of open-ended responses about why women chose their risk estimates in a uniquely large sub-sample ( N = 1,754). Clinician estimates of systemic recurrence risk were provided for patient sub-groups with DCIS and with low-, intermediate-, and high-risk invasive disease. Women's perceived risk of systemic recurrence (0% to 100%) was categorized as overestimation, reasonably accurate estimation, or underestimation (0% for invasive disease) and was compared across identified factors and by clinical presentation. RESULTS: Women identified 9 main factors related to their clinical experience (e.g., diagnosis and testing; treatment) and non-clinical beliefs (e.g., uncertainty; spirituality). Women who mentioned at least one clinical experience factor were significantly less likely to overestimate their risk (12% v. 43%, P < 0.001). Most women who were influenced by "communication with a clinician" had reasonably accurate recurrence estimates (68%). "Uncertainty" and "family and personal history" were associated with overestimation, particularly for women with DCIS (75%; 84%). "Spirituality, religion, and faith" was associated with an underestimation of risk (63% v. 20%, P < 0.001). LIMITATIONS: The quantification of our qualitative results is subject to any biases that may have occurred during the coding process despite rigorous methodology. CONCLUSIONS: Patient-clinician communication is important for breast cancer patients' understanding of their numeric risk of systemic recurrence. Clinician discussions about recurrence risk should address uncertainty and relevance of family and personal history.
BACKGROUND: Breast cancer patients' misunderstanding of their systemic cancer recurrence risk has consequences on decision-making and quality of life. Little is known about how women derive their risk estimates. METHODS: Using Los Angeles and Georgia's SEER registries (2014-2015), a random sample of early-stage breast cancer patients was sent surveys about 2 to 3 months after surgery ( N = 3930; RR, 68%). We conducted an inductive thematic analysis of open-ended responses about why women chose their risk estimates in a uniquely large sub-sample ( N = 1,754). Clinician estimates of systemic recurrence risk were provided for patient sub-groups with DCIS and with low-, intermediate-, and high-risk invasive disease. Women's perceived risk of systemic recurrence (0% to 100%) was categorized as overestimation, reasonably accurate estimation, or underestimation (0% for invasive disease) and was compared across identified factors and by clinical presentation. RESULTS: Women identified 9 main factors related to their clinical experience (e.g., diagnosis and testing; treatment) and non-clinical beliefs (e.g., uncertainty; spirituality). Women who mentioned at least one clinical experience factor were significantly less likely to overestimate their risk (12% v. 43%, P < 0.001). Most women who were influenced by "communication with a clinician" had reasonably accurate recurrence estimates (68%). "Uncertainty" and "family and personal history" were associated with overestimation, particularly for women with DCIS (75%; 84%). "Spirituality, religion, and faith" was associated with an underestimation of risk (63% v. 20%, P < 0.001). LIMITATIONS: The quantification of our qualitative results is subject to any biases that may have occurred during the coding process despite rigorous methodology. CONCLUSIONS: Patient-clinician communication is important for breast cancer patients' understanding of their numeric risk of systemic recurrence. Clinician discussions about recurrence risk should address uncertainty and relevance of family and personal history.
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