Abstract
Purpose :
A prognostic 15-gene expression profiling (GEP) test is widely used for risk stratification in patients with uveal melanoma (UM). The goal of this cross-sectional survey study was to understand patient experiences following 15-GEP testing compared to alternative or no prognostic testing.
Methods :
An online questionnaire was distributed by the Melanoma Research Foundation’s CURE OM initiative that captured anonymous information regarding patient-reported experiences. Patients were asked validated series of questions regarding the decision to undergo prognostic testing and the extent to which they felt decision regret.
Results :
Of the 177 survey participants, 159 (90%) reported wanting prognostic information at diagnosis, but only 124 (70%) remembered the doctor discussing prognostic testing with them. Of all respondents, 91 (51%) had 15-GEP testing, 33 (19%) had alternative prognostic tests, 48 (27%) did not have any prognostic testing, and 19 (11%) did not know (10% of respondents reported having multiple tests). Interestingly, 15-GEP patients reported feeling more involved in their health care decisions regarding testing than those receiving alternative testing only (WilcoxRS, n=85 and 21 respondents, respectively; p=0.0006). Of 15-GEP-tested patients, the vast majority (80/81 respondents, 99%) reported gaining value from their test result, including increased knowledge and understanding, more personalized treatment options, information relevant to life planning, and a sense of relief from uncertainty about the future. Patients who received prognostic testing experienced lower levels of decision regret than those who opted out of testing, independent of which prognostic tests were used (K-W, p=0.001; WilcoxRS post-hoc, n=85, 16 and 5 for GEP, other tests and no GEP; GEP vs. other tests: p=0.89, GEP vs. no GEP: p=0.0002, other test vs. no GEP: p=0.003). Importantly, decision regret levels did not differ depending on 15-GEP Class result (K-W; n=28, 23, 30 for 1A, 1B, 2; p=0.13).
Conclusions :
The majority of newly diagnosed UM patients desired prognostic information, though testing options were not always introduced by the doctor. Prognostic testing with 15-GEP had considerable value to UM patients, independent of Class result, and having this test offered at the time of diagnosis was associated with an increased sense of shared decision making.
This is a 2021 ARVO Annual Meeting abstract.