Preferences of women with epithelial ovarian cancer for aspects of genetic testing

Abstract

BackgroundAlthough genetic testing is recommended for women with epithelial ovarian cancer (EOC), little is known about patient preferences for various testing options. We measured relative preferences for attributes of testing in women with EOC referred for genetic counseling.MethodsSubjects were recruited to participate in a discrete-choice-experiment survey to elicit preferences for attributes of genetic testing: out-of-pocket cost ($0, $100, $250, or $1000), probability of a deleterious mutation (60, 80%, or 88%), probability of a variant of uncertain significance (VUS) result (5, 20%, or 40%), sample requirements (blood or saliva), and turn-around time (1, 2 or 4 weeks). Subjects viewed educational videos followed by a series of choices between pairs of constructed genetic tests with varying attribute levels. Random-parameters logit was used to estimate preference weights for attribute levels. Relative importance weights and money-equivalent values were calculated.ResultsNinety-four patients were enrolled; 68 (76.4%) presented for genetic counseling. Test cost was the most important attribute to subjects (importance weight = 41 out of 100) followed by probability to detect deleterious mutations (36) and probability of a VUS result (20). Sample requirements and turnaround time did not drive test choices. Subjects were willing to pay an additional $155 and $70 for incremental 5% improvements in the probability to detect deleterious mutations and probability of a VUS result. At genetics consultation, 55/68 (80.9%) subjects chose multigene testing.ConclusionsLow out-of-pocket cost, high probability of detecting deleterious mutations and high probability of a VUS result are preferred by patients with EOC considering genetic testing.Electronic supplementary materialThe online version of this article (10.1186/s40661-019-0066-8) contains supplementary material, which is available to authorized users.

Patient Satisfaction with Private Genetic Counselling for Familial Cancer in Western Australia: A Prospective Audit

“…Studies of patient-perceived value for money in genetic counselling are limited and this gap in knowledge represents an important area for future research. In women with ovarian cancer in whom genetic testing is recommended, the cost of testing was the most important factor, followed by probability of detecting a pathogenic variant, in 94 enrolled subjects recruited in a choice experiment survey of whom 68 (76.4%) presented for genetic counselling (Davidson et al, 2019). As current testing costs are now lower than those at the time this study was undertaken and some private patients are now eligible for Medicarefunded genetic testing, it could be hypothesized that satisfaction/perceived value would now be even higher.…”

Willingness-to-pay for cancer treatment and outcome: a systematic review

“…DCE studies generally performed better than CV in quality assessment, with only 1/17 (5.9%) [82] graded as low quality. Majority of the studies (10/17, 58.8%) [48,51,57,69,75,78,[83][84][85][86] were of high quality while 6/17 (35.3%) [49,50,53,65,72,74] were of moderate quality.…”

“…b Inclusive of 9 conference abstracts c Inclusive of 4 studies that did not clearly mention CV, but methodology is suggestive of CV d Total number of studies is more than 54 as some studies reported more than one outcome[ 39,42,44,48,50,63,81,82,84,85] …”

Conjoint Analysis: A Research Method to Study Patients’ Preferences and Personalize Care

“…For example, in clinics where the majority of cases are non-urgent, CA was found to be a useful tool for allowing patients to discuss their needs and choose medication, health service, and diagnostic tests that suit them the most [63,64]. In turn, CA constituted a supportive tool for clinicians to better understand patients' preferences and individualize their treatment plans [24,65,66]. Hence, the CA use in practice was suggested as a tool to effectively strengthen the communication between patients and healthcare professionals and to engage both parties in the shared decision-making process [12,62].…”