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A Prospective Comparison Study of Different Methods of Gathering Self-Reported Family History Information for Breast Cancer Risk Assessment
Authors:Caroline Benjamin  Katie Booth  Ian Ellis
Affiliation:(1) Department of Nursing, University of Liverpool and Liverpool Women's Hospital Trust and Genetics Directorate, Alder Hey Hospital, Liverpool, United Kingdom;(2) Macmillan Practice Development Unit, University of Manchester School of Nursing, Midwifery and Health Visiting, Manchester University, United Kingdom;(3) Institute of Child Health, University of Liverpool, Liverpool, United Kingdom
Abstract:Currently there is much debate regarding the ability of mathematical models incorporating epidemiological information or mutation-based risk algorithms to accurately predict a woman's risk of developing breast cancer. Without access to accurate family history information these models have limited use. This study compares different methods of gathering family history information and the impact on subsequent risk assessment. These methods were compared to the ldquogold standardrdquo interview with a trained genetics' professional. The amount and accuracy of information provided by primary care doctors' letters was found to be poor and better information was obtained by sending a postal questionnaire directly to the patient. Because of the high number of low-risk women referred to clinic a questionnaire (the FCAT) was designed to provide reassurance and piloted as part of this study. This paper highlights the importance of using appropriate methods to gather the family history information. It presents evidence for the importance of a skilled assessor and the need to allow time for women to discuss the importance of this information with their family.
Keywords:breast cancer  risk assessment  primary care  genetic counselling  nursing  blinded prospective comparison study
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