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

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.

Hereditary Cancer Risk Using a Genetic Chatbot Before Routine Care Visits

“…22 Family history collection is a well-established screening tool for evaluating hereditary cancer risk in patients, but it is time consuming and can be difficult to obtain in families with limited communication. [13][14][15][16] Although 70% of Americans report discussing family cancer history with at least one family member, fewer than one third report knowing their family cancer history well. 26 Prior findings indicate that digital tools can increase the odds of communicating with family about shared risks.…”

“…11 Family history collection remains the gold standard for triaging patients into cancer-risk categories, 12 but this method is time-consuming, inaccurate, and generally underused. [13][14][15][16] Scalable and integrated solutions are needed to aid health care professionals in identifying at-risk patients.…”

Patient outcomes of genetic counseling: Assessing the impact of different approaches to family history collection

“…Studies of different approaches to family history collection (eg, questionnaires, preappointment phone calls, computer‐based family history collection tools, and virtual genetic counselors) have assessed: accuracy of information collected, accuracy with which individuals at increased risk of a condition can be identified and feasibility of implementing such a tool in a clinical setting . These studies have focused on the medical utility of family history, and although some have investigated patient satisfaction and/or ease of use, none (that we were able to identify) have yet investigated the effects of different approaches to family history collection on patient outcomes of genetic counseling.…”

Expanding Family Health History to Include Family Medication History

“…Some challenges should be considered when expanding FHH to include family medication history. It has been well-documented that FHH is under-utilized for a variety of reasons [ 42 , 43 , 44 , 45 ] and thus, suggesting collection of further information may not be feasible. In particular, evidence suggests that FHH is under-reported [ 46 , 47 , 48 , 49 , 50 ] and potentially inaccurate or incomplete [ 51 , 52 , 53 ], with patient recall, sharing, and communication impacted by multiple factors including unawareness, differences in knowledge of maternal vs. paternal family histories, patient gender, degree of relatives, and cultural factors [ 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 ].…”