Patients’ Preferences for Genomic Diagnostic Testing in Chronic Lymphocytic Leukaemia: A Discrete Choice Experiment

Abstract

BackgroundGenomic information could help to reduce the morbidity effects of inappropriate treatment decisions in many disease areas, in particular cancer. However, evidence of the benefits that patients derive from genomic testing is limited. This study evaluated patient preferences for genomic testing in the context of chronic lymphocytic leukaemia (CLL).MethodsWe used a discrete choice experiment (DCE) survey to assess the preferences of CLL patients in the UK for genomic testing. The survey presented patients with 16 questions in which they had to choose between two possible test scenarios. Tests in these scenarios were specified in terms of six attributes, including test effectiveness, test reliability and time to receive results.Results219 patients completed the survey (response rate 20 %). Both clinical and process-related attributes were valued by respondents. Patients were willing to pay £24 for a 1 % increase in chemotherapy non-responders identified, and £27 to reduce time to receive test results by 1 day. Patients were also willing to wait an extra 29 days for test results if an additional one-third of chemotherapy non-responders could be identified, and would tolerate a genomic test being wrong 8 % of the time to receive this information.ConclusionCLL patients value the information that could be provided by genomic tests, and prefer combinations of test characteristics that more closely reflect future genomic testing practice than current genetic testing practice. Commissioners will need to carefully consider how genomic testing is operationalised in this context if the benefits of testing are to be realised.Electronic supplementary materialThe online version of this article (doi:10.1007/s40271-016-0172-1) contains supplementary material, which is available to authorized users.

Valuation of Health and Nonhealth Outcomes from Next-Generation Sequencing: Approaches, Challenges, and Solutions

“…Lewis et al [12] determined that parents were interested in the return of highly penetrant nonmedically actionable conditions in children, particularly if manifestations were more severe (e.g., earlier age of onset and greater level of disability). Buchanan et al [3] and Cuffe et al [13] provide evidence of disutility for waiting longer for the results of NGS, with the former also finding that respondents had a preference for who delivered the results. Marshall et al [14] found that women preferred to receive chemotherapy for early-stage breast cancer if they trusted their oncologist's opinion, irrespective of NGS estimates of recurrence risk and likely benefit from chemotherapy.…”

“…Specificity was the proportion of patients who would not benefit from the new medication but would receive it because of incorrect test results. Buchanan et al [3] incorporated test reliability into their DCE, defining the attribute in terms of the number of tests that provide an incorrect result. These studies found that respondents could distinguish between attribute levels describing various levels of accuracy.…”

“…These instruments might not capture all the benefit-risk trade-offs of NGS health, nonhealth, and process outcomes. Buchanan et al [3] highlighted that measures informing QALYs do not incorporate preferences for nonhealth outcomes (e.g., false-positive rate) or process outcomes (e.g., time waiting for results). This observation is important in context of the assertion by Marshall et al [4] that the value of NGS depends on the information that patients receive and the benefits that patients and providers ascribe to NGS information.…”

A Multinational European Study of Patient Preferences for Novel Diagnostics to Manage Antimicrobial Resistance

“…Nonetheless, differences in patient preferences between countries have also been found in various health settings, such as primary care [27], anti-osteoporosis treatments [28] and medication persistence [29]. In addition, there have been numerous studies that examine patient preferences for other diagnostic tests, such as screening tests for: cancer [30]; Alzheimer's disease [31]; colorectal cancer [32]; Down's syndrome [33] and leukaemia [34]. These studies provide additional evidence to suggest that patients value convenience [31], as well as additional evidence of the importance of confidence in diagnostic test results [30,[32][33][34].…”

“…In addition, there have been numerous studies that examine patient preferences for other diagnostic tests, such as screening tests for: cancer [30]; Alzheimer's disease [31]; colorectal cancer [32]; Down's syndrome [33] and leukaemia [34]. These studies provide additional evidence to suggest that patients value convenience [31], as well as additional evidence of the importance of confidence in diagnostic test results [30,[32][33][34]. Notably, two of these studies (focused on tests for Down's syndrome and leukaemia) suggest that confidence is more important than waiting time [33,34], which is in line with our findings.…”