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. 2016 Dec;9(6):525-536.
doi: 10.1007/s40271-016-0172-1.

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

James Buchanan  1 , Sarah Wordsworth  2 , Anna Schuh  3   4
Affiliations

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

James Buchanan et al. Patient. 2016 Dec.

Abstract

Background: Genomic 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).

Methods: We 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.

Results: 219 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.

Conclusion: CLL 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.

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Conflict of interest statement

Compliance with Ethical Standards Ethical approval This study has been performed in accordance with the ethical standards of the Declaration of Helsinki. Ethical approval was sought from the UK National Research Ethics Service and the Oxford University Hospitals NHS Foundation Trust R&D office. Both bodies stated that ethical approval was not required. As the researchers had no direct contact with survey respondents, the topic of research was low risk, and participation was confined to one small task, informed consent was not obtained from all individual participants in the study. As per institutional guidelines (https://www.admin.ox.ac.uk/curec/resources/informed-consent/), participants, by their actions, implied consent. Funding This paper represents independent research arising from a Doctoral Research Fellowship awarded to James Buchanan and supported by the National Institute for Health Research (NIHR). Sarah Wordsworth and Anna Schuh are supported by the NIHR Biomedical Research Centre, Oxford with funding from the Department of Health’s NIHR Biomedical Research Centres funding scheme and by the Wellcome Trust (090532/Z/09/Z), (076113), (085475). Anna Schuh is also funded for independent research commissioned by the Health Innovation Challenge Fund (HICF-1009-026), a parallel funding partnership between the Wellcome Trust and the Department of Health. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the Wellcome Trust, the NIHR or the Department of Health. Conflict of interest James Buchanan, Sarah Wordsworth and Anna Schuh declare that they have no conflicts of interest.

References

    1. National Institute for Health and Care Excellence. Familial breast cancer: the classification and care of women at risk of familial breast cancer in primary, secondary and tertiary care 2006. https://www.nice.org.uk/guidance/cg164.
    1. Mardis ER. The impact of next-generation sequencing technology on genetics. Trends Genet. 2008;24(3):133–141. doi: 10.1016/j.tig.2007.12.007. - DOI - PubMed
    1. Ioannidis JPA, Khoury MJ. Are randomized trials obsolete or more important than ever in the genomic era? Genome Medicine. 2013;5(4):32. doi: 10.1186/gm436. - DOI - PMC - PubMed
    1. Buchanan J, Wordsworth S, Schuh A. Issues surrounding the health economic evaluation of genomic technologies. Pharmacogenomics. 2013;14(15):1833–1847. doi: 10.2217/pgs.13.183. - DOI - PMC - PubMed
    1. Foster MW, Mulvihill JJ, Sharp RR. Evaluating the utility of personal genomic information. Genet Med. 2009;11(8):570–574. doi: 10.1097/GIM.0b013e3181a2743e. - DOI - PubMed