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Individualized Survival Curves Improve Satisfaction With Cancer Risk Management Decisions in Women With BRCA1/2 Mutations

From the Department of Medicine; Abramson Family Cancer Research Institute; and Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania School of Medicine; Leonard Davis Institute of Health Economics, University of Pennsylvania; Center for Health Equity Research and Promotion, Philadelphia Veterans Affairs Medical Center, Philadelphia, PA; and Veterans Affairs Health Services Research and Development Center for Practice Management and Outcomes Research, Veterans Affairs Ann Arbor Health Care System, Ann Arbor, MI

Address reprint requests to Katrina Armstrong, MD, MSCE, 1204 Blockley Hall, 423 Guardian Dr, Philadelphia, PA 19104-6021; e-mail: karmstro{at}mail.med.upenn.edu

PURPOSE: Women with BRCA1/2 mutations are faced with complex decisions about breast and ovarian cancer risk management. This study was conducted to determine the effect of a tailored decision support system (DSS) that provides individualized survival and cancer incidence curves specific to expected outcomes of alternative management strategies.

PATIENTS AND METHODS: This was a double-blind, randomized controlled trial of 32 women with BRCA1/2 mutations. Primary outcome measures were decision satisfaction, cancer anxiety, perceptions of cancer risk given alternative management strategies, and management decisions.

RESULTS: Twenty-seven women completed a 6-week follow-up. Women in the intervention arm (n = 13) reported significantly higher decision satisfaction at follow-up than women in the control arm (n = 14; adjusted mean difference, 9.7; P < .0005). The effect of the DSS was greater among women with low cancer anxiety at baseline than women with high cancer anxiety at baseline (P = .01 for interaction). However, the DSS did not significantly alter cancer anxiety at follow-up, perceptions of cancer risk given alternative management strategies, or management decisions.

CONCLUSION: The presentation of individualized survival and incidence curves for alternative management options improves satisfaction about cancer risk management decisions among women with BRCA1/2 mutations without increasing anxiety or changing management decisions. The benefit of the DSS is greatest among women with relatively low cancer-related anxiety at baseline.

Supported by Department of Defense Breast Cancer Research Program DAMD17-98-1-8234.

Authors' disclosures of potential conflicts of interest are found at the end of this article.

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