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Preferences for outcomes associated with decisions to undergo or forego genetic testing for Lynch syndrome
Abstract
BACKGROUND:
Current
guidelines recommend offering genetic testing for Lynch syndrome to
individuals whose tumors suggest this condition and to relatives of
affected individuals. Little is known, however, regarding how patients
view the prospect of such testing. In addition, data on preferences
(utilities) for the potential outcomes of testing decisions for use in
cost-effectiveness analyses are lacking.
METHODS:
Time
tradeoff utilities were elicited for 10 potential outcomes of Lynch
syndrome testing decisions and 3 associated cancers from 70
participants, representing a range of knowledge about and experiences
with Lynch syndrome.
RESULTS:
Highest
mean utilities were assigned to scenarios in which only the assessor's
sibling had Lynch-associated colorectal cancer (ranging from 0.669 ±
0.231 to 0.760 ± 0.220). Utilities assigned to scenarios in which the
assessor had Lynch-associated colorectal cancer ranged from 0.605 ±
0.252 to 0.682 ± 0.246, whereas the lowest mean utilities were assigned
to 2 of the general cancer states (0.601 ± 0.238 and 0.593 ± 0.272 for
colorectal and ovarian cancer respectively). Only 43% of the sample
assigned higher values to undergoing Lynch testing and receiving
negative results versus foregoing Lynch testing, whereas 50% assigned
higher values to undergoing rather than foregoing surgery to prevent a
subsequent cancer.
CONCLUSIONS:
Genetic
testing for Lynch syndrome, regardless of results, can have profound
effects on quality of life; the utilities we collected can be used to
incorporate these effects into cost-effectiveness analyses. Importantly,
preferences for the potential outcomes of testing vary substantially,
calling into question the extent to which patients would avail
themselves of such testing if it were offered to them. Cancer 2012. ©
2012 American Cancer Society
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