UBC Faculty Research and Publications

Risk communication in genetic counselling : exploring uptake and perception of recurrence numbers, and their impact on patient outcomes Borle, Kennedy; Morris, Emily; Inglis, Angela; Austin, Jehannine

Abstract

Providing recurrence numbers is often considered a fundamental component of genetic counselling. We sought to fill knowledge gaps regarding how often patients actively seek recurrence numbers, and how they impact patient outcomes. We conducted a retrospective chart review at a clinic where patients routinely complete the Genetic Counselling Outcomes Scale [GCOS, measuring empowerment] pre (T1)/post (T2)-appointment. Using ANCOVA we evaluated the effect on T2 GCOS score of: a) receiving recurrence numbers, and b) patient perception of recurrence numbers. Recurrence numbers were a primary indication for 134/300 patients (45%). After counselling about etiology and risk-reducing strategies, 116 patients (39%) opted to receive recurrence numbers, with most (n=64, 55%) perceiving the number to be lower than expected. There was no difference in T2 GCOS scores between those who: a) received recurrence numbers vs. those who did not, or b) perceived the number to be lower than expected vs. those with other perceptions. However, a subset of patients who did not receive recurrence numbers had larger increases in GCOS scores. Our data provide impetus to question the assumption that recurrence numbers should be routinely provided in genetic counselling, and demonstrate that in naturalistic practice optimal patient outcomes are not contingent on receipt of recurrence numbers.

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