Reading Between the Lines: A Comparison of Responders and Non-responders to a Family History Questionnaire and Implicati
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ORIGINAL RESEARCH
Reading Between the Lines: A Comparison of Responders and Non-responders to a Family History Questionnaire and Implications for Cancer Genetic Counselling Julia H. Appleby-Tagoe & William D. Foulkes & Laura Palma
Received: 18 June 2010 / Accepted: 26 July 2011 / Published online: 16 August 2011 # National Society of Genetic Counselors, Inc. 2011
Abstract Family history questionnaires (FHQ) are useful tools for cancer genetic counseling, providing an informational basis for pedigree construction and individualized cancer risk assessment. Reported return rates of mailed FHQs amongst familial cancer clinics that utilize them are lower than desired however, and it is unknown whether patients perceive required completion of a FHQ as a barrier to access of cancer genetics services. This study critically evaluated the use of a mailed FHQ for all routine new patient referrals to a single hereditary cancer clinic in Quebec, Canada. Reasons for response/non-response to a FHQ and the effect of administration of a questionnaire on patients’ self-reported level of motivation to pursue genetic counseling, were examined. Of 112 eligible individuals referred during the study period, 86 completed a semistructured telephone survey; of these, 45% had returned the mailed FHQ prior to the telephone survey (Responders) and 55% had not (Non-responders). Overall, the majority of participants indicated a FHQ is an acceptable and underJ. H. Appleby-Tagoe : W. D. Foulkes : L. Palma (*) Department of Medical Genetics, Montreal General Hospital, McGill University Health Centre, 1650 Cedar Ave., Room L10-120, Montreal, QC H3G 1A4, Canada e-mail: [email protected] W. D. Foulkes Program in Cancer Genetics, Departments of Oncology and Human Genetics, McGill University, Montreal, QC, Canada Present Address: J. H. Appleby-Tagoe Genetic Services, Alberta Health Services—South Zone, Lethbridge, AB, Canada
standable method of collecting family history information. Most prevalent reasons for not returning the FHQ were (bad) timing (56%), and difficulty accessing family history information (46%). Non-response was significantly associated with difficulty in asking relatives for the requested information (p=0.011), and Non-responders cited fewer overall perceived benefits of cancer genetic counseling as compared with Responders (p
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