Utilizing Patient Surveys to Drive Process Changes Within a High-Risk Genetic Clinic

Background: High-risk breast cancer clients are encouraged to have a genetic consult and possible genetic testing to help guide current treatment decisions and provide information regarding personal and familial risk of cancer recurrence. Some clients may express initial interest in having a genetic consult but never return the family history questionnaire in order to proceed with the consultation process.

Objectives: To attempt to understand why some clients do not use genetic consultation services. Information gained may serve as a guide to promote necessary change to the current consultation process and increase future consultation rates for the high-risk breast cancer patient population.

Methods: A 6-item semistructured telephone survey was created based on a review of the literature focusing on factors that influence the decision to utilize genetic consultation services. Four survey items were dichotomous questions and 2 items were multiple choice questions. Survey questions explored the client’s perceived knowledge level and personal feelings surrounding the use of genetic testing and reasons for not returning the family history questionnaire. Participants were eligible if they had been sent a family history questionnaire between the months of January 2011 and April 2012 and had yet to return the questionnaire to the high-risk clinic coordinator.

Results: Among 46 eligible participants, there was a 52% response rate. The majority of respondents (75%) felt that they had received enough information regarding their personal need for testing to make an informed decision and that the information gained from testing would be useful to them and their healthcare provider. Survey results indicated that 54% of respondents felt that “time constraints” was the primary reason for not returning the family history questionnaire and proceeding with the genetic consultation process. Other reasons included feeling that the test results would not affect treatment decisions (17%), unknown family history (17%), lack of adequate insurance coverage (13%), never received/misplaced questionnaire (13%), and personal hesitations (1%). Results from this survey correlate with previous findings from the literature. O’Neill and colleagues¹ found that there were no significant knowledge differences between those who declined testing and those who did not. Those who declined were more likely to report not having time, not wanting more testing, or already having enough knowledge related to cancer risk. Other reported reasons for failing to return family history questionnaires included decreased knowledge of family history, lack of adequate time, never having received a packet, being confused/overwhelmed, or forgetfulness.^2,3

Conclusions: Individual time constraints significantly contributed to the underutilization of genetic consultation services within the survey group. Personal time, or lack thereof, cannot be altered by the breast nurse navigator or the high-risk genetic clinic. The survey results did not produce evidence to support a change to the current genetic consultation process at this time.

References

1. O’Neill S, Peters J, Vogel V, et al. Referral to cancer genetic counseling: are there stages of readiness? Am J Med Genet. 2006;142C(4):221-231.
2. Appleby-Tagoe J, Foulkes WD, Palma L. Reading between the lines: a comparison of responders and non-responders to a family history questionnaire and implications for cancer genetic counseling. J Genet Couns. 2012;21(2):273-291.
3. Armel SR, Hitchman K, Millar K, et al. The use of family history questionnaires: an examination of genetic risk estimates and genetic testing eligibility in the non-responder population. J Genet Couns. 2011;20(4):355-364.