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Journal of Genetic Counseling

, Volume 24, Issue 5, pp 822–832 | Cite as

All in the Family: Barriers and Motivators to the Use of Cancer Family History Questionnaires and the Impact on Attendance Rates

  • Susan Randall ArmelEmail author
  • Jeanna McCuaig
  • Nicole Gojska
  • Rochelle Demsky
  • Manjula Maganti
  • Joan Murphy
  • Barry Rosen
Original Research

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 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 

Notes

Conflict of Interest

Author Susan Randall Armel, author Jeanna McCuaig, author Nicole Gojska, author Rochelle Demsky, author Manjula Maganti, author Joan Murphy, and author Barry Rosen declare that they have no conflicts of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

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Copyright information

© National Society of Genetic Counselors, Inc. 2015

Authors and Affiliations

  • Susan Randall Armel
    • 1
    • 2
    • 3
    Email author
  • Jeanna McCuaig
    • 1
    • 2
    • 3
  • Nicole Gojska
    • 1
  • Rochelle Demsky
    • 1
    • 2
    • 3
  • Manjula Maganti
    • 4
  • Joan Murphy
    • 1
    • 2
    • 5
  • Barry Rosen
    • 1
    • 2
    • 5
  1. 1.The Familial Breast and Ovarian Cancer ClinicPrincess Margaret Cancer CentreTorontoCanada
  2. 2.Department of Gynecologic OncologyPrincess Margaret Cancer CentreTorontoCanada
  3. 3.Department of Molecular GeneticsUniversity of TorontoTorontoCanada
  4. 4.Department of BiostatisticsPrincess Margaret Cancer CentreTorontoCanada
  5. 5.Department of Obstetrics and GynecologyUniversity of TorontoTorontoCanada

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