Reading Between the Lines: A Comparison of Responders and Non‐responders to a Family History Questionnaire and Implications for Cancer Genetic Counselling

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 semi-structured 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 understandable 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 < 0.0001). One quarter of Non-responders returned the mailed FHQ following administration of the telephone survey, suggesting implementation of a follow-up prompt is a cost-effective way to increase response.

A systematic review of factors that act as barriers to patient referral to genetic services

“…This may explain why there is significant research investigating appropriate access to cancer genetic services by all those eligible and whether the outcomes of these services are producing favourable results such as prevention of cancer. 13,15,[25][26][27][28][29][30][31][32][33][34][35][36] It was not surprising that the majority of studies focused on the role or practice of HCPs in patients' access to genetic services. The translation of new genetic information and technology into medical care is challenged by several factors, including lack of adequate genetic workforce and increased demand of specialist care in genetics, which was also reported as a barrier in this review.…”

An Internal Performance Assessment of CancerGene Connect: An Electronic Tool to Streamline, Measure and Improve the Genetic Counseling Process

“…However, other research has shown that patients living in either suburban or urban areas were equally likely to access the internet, even though suburban residents were more likely to own a computer and urban residents had a higher odds of being uninsured (Bond et al, 2012). Household income cannot always predict internet use (Appleby-Tagoe et al, 2012; Bond et al, 2012; Simon et al, 2008). Research has shown that mental health issues and substance use have not been barriers to online health information either (Hilton et al, 2012).…”

“…Privacy concerns should also be discussed, as the potential for additional loss of confidentiality has been established as a barrier to electronic family history intake (Simon et al, 2008). Furthermore, patients should be made aware of the importance of genetic counseling and that gathering a complete family history will allow them to maximize their benefit from the genetic counseling process (Appleby-Tagoe et al, 2012). …”

Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

“…How large this group is, is not easily determined. It is known that factors like anxiety (Geer et al 2001), financial barriers (Armstrong et al 2005;Forman and Hall 2009) and problems with contacting family members about their specific cancer diagnosis (Appleby-Tagoe et al 2011) play a role.…”