Development of a risk assessment tool for women with a family history of breast cancer Dejana Braithwaite PhD a, * , Stephen Sutton PhD b , James Mackay MD c , Judith Stein RN d , Jon Emery MD, PhD e a Carol Franck Buck Breast Care Center, UCSF Comprehensive Cancer Center, University of California, 2186 Geary Boulevard, Suite 103, San Francisco, CA 94115, USA b Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK c Genetics Unit, North East Thames Clinical Genetic Service, Great Ormond Street Hospital and the Institute of Child Health, London, UK d Familial Breast Clinic, Department of Surgery, University College London Hospital, London, UK e Discipline of General Practice, University of Western Australia, Perth, Australia Accepted 10 June 2005 Abstract Background: Innovative technologies that enable the collection of family history information and the assessment of breast cancer risk have a potential to enhance the quality of preventive care. We developed a computerized tool that supports stratification of breast cancer risk, genetic risk assessment in the clinical environment (GRACE). Methods: In a preliminary evaluation of the tool’s impact, we randomized women with a family history of breast cancer (n = 72) to either use the GRACE tool or undergo risk counseling by a nurse specialist. Results: There was no statistically significant differences between the GRACE and nurse counselling groups in risk perceptions (F = .03, P > .05) and cancer-related worries (F = .80, P > .05). However, patients reported more positive attitudes toward working with the nurse. Conclusion: It was feasible to use GRACE in a Clinic. Additional research is required to identify solutions for providing emotional support in conjunction with the tool. # 2005 International Society for Preventive Oncology. Published by Elsevier Ltd. All rights reserved. Keywords: Breast cancer; BRCA1; BRCA2; Risk assessment; Counseling; Computer support; Psychological impact; Patient education; Questionnaires; Interventions; Mammography; Perceived benefits; Risk perception; Risk accuracy; Cancer worry; Genetic risk assessment in the clinical environment (GRACE) 1. Introduction The increase in the demand for cancer genetic services during the last 15 years [1], and the scarcity of trained cancer genetic counselors and cancer geneticists [2] have been the catalyst for the development of alternative and innovative methods for advising people about the risk of inherited breast cancer [3–5]. Future improvements in breast cancer care hinge on the integration of clinical information systems that, at the point of care, enable risk stratification and provide tailored risk information within a clinical decision making framework. While we are improving our ability to tailor estimates of disease risk, there are very few tools that allow these risks to be put in a decision-ready context. Evidence is emerging in support of the feasibility of computerized cancer risk questionnaires [6]. In addition, two trials [7–9] points to the value of computerized educational tools in helping individuals obtain information about inherited breast cancer risk and predictive genetic tests, with computer group participants scoring more highly on knowledge questions than those in the counseling arm. Communication of risk represents the basis of genetic counseling for familial cancer, where the goal is to facilitate a person’s comprehension of his or her risk for an inherited disorder and understanding of options for dealing with the risk of occurrence without causing psychological distress [10]. The value of computerized risk communication tools is not well understood, although there is some evidence that computerized tailoring of colorectal cancer risk communic- ation ameliorates misperceptions about individual risk [11]. Few risk assessment tools have been designed for use by patients themselves. One prototype is the Breast Cancer Risk www.elsevier.com/locate/cdp Cancer Detection and Prevention 29 (2005) 433–439 * Corresponding author. Tel.: +1 415 476 0260; fax: +1 415 476 0272. E-mail address: dejana.braithwaite@ucsfmedctr.org (D. Braithwaite). 0361-090X/$30.00 # 2005 International Society for Preventive Oncology. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.cdp.2005.06.001