All in the Family: Barriers and Motivators to the Use of Cancer Family History Questionnaires and the Impact on Attendan
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ORIGINAL RESEARCH
All in the Family: Barriers and Motivators to the Use of Cancer Family History Questionnaires and the Impact on Attendance Rates Susan Randall Armel & Jeanna McCuaig & Nicole Gojska & Rochelle Demsky & Manjula Maganti & Joan Murphy & Barry Rosen
Received: 17 October 2014 / Accepted: 12 December 2014 # National Society of Genetic Counselors, Inc. 2015
Abstract Data has demonstrated that family history questionnaires (FHQs) are an invaluable tool for assessing familial cancer risk and triaging patients for genetic counseling services. Despite their benefits, return rates of mailed FHQs from newly referred patients remain low, suggesting potential barriers to their use. To investigate this, a total of 461 participants, 239 who completed a FHQ (responders) and 222 who did not (non-responders), were surveyed at a subsequent appointment regarding potential barriers and motivators to using the FHQ. With respective rates of 51 and 56 %, there was no significant difference in the proportion of responders and non-responders who reported difficulty in completing the FHQ; however, for both groups factors related to family dynamics (large family size, lack of contact with relatives, and lack of knowledge of family history) were reported as major variables confounding completion of the FHQ. Responders were also significantly more likely to have a personal S. R. Armel (*) : J. McCuaig : N. Gojska : R. Demsky : J. Murphy : B. Rosen The Familial Breast and Ovarian Cancer Clinic, Princess Margaret Cancer Centre, 610 University Ave., Room M-704, Toronto, ON M5G 2M9, Canada e-mail: [email protected] S. R. Armel : J. McCuaig : R. Demsky : J. Murphy : B. Rosen Department of Gynecologic Oncology, Princess Margaret Cancer Centre, Toronto, ON, Canada S. R. Armel : J. McCuaig : R. Demsky Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada M. Maganti Department of Biostatistics, Princess Margaret Cancer Centre, Toronto, ON, Canada J. Murphy : B. Rosen Department of Obstetrics and Gynecology, University of Toronto, Toronto, ON, Canada
diagnosis of cancer (p=0.02) and to report that their physician had discussed the reason for the appointment with them (p= 0.01). Overall, 19 % of non-responders returned their FHQ after being mailed an appointment letter and 67 % attended their scheduled genetic counseling appointment. These findings demonstrate that difficulty completing the FHQ is not inherent to its design but due to difficulty accessing one’s family history, and that mailed appointment letters are a highly successful way to increase attendance rates in the non-responder population. Furthermore, these results demonstrate the important role that referring physicians play in the utilization of genetic counseling services. Keywords Genetic counseling . Family history questionnaire . Hereditary breast and ovarian cancer . Service utilization
Introduction With increasing knowledge and heightened public awareness of the hereditary component of breast and ovarian cancer, the demand for genetic c
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