Public stated preferences and predicted uptake for genome-based colorectal cancer screening

Background Emerging developments in nanomedicine allow the development of genome-based technologies for non-invasive and individualised screening for diseases such as colorectal cancer. The main objective of this study was to measure user preferences for colorectal cancer screening using a nanopill. Methods A discrete choice experiment was used to estimate the preferences for five competing diagnostic techniques including the nanopill and iFOBT. Alternative screening scenarios were described using five attributes namely: preparation involved, sensitivity, specificity, complication rate and testing frequency. Fourteen random and two fixed choice tasks, each consisting of three alternatives, were offered to 2225 individuals. Data were analysed using the McFadden conditional logit model. Results Thirteen hundred and fifty-six respondents completed the questionnaire. The most important attributes (and preferred levels) were the screening technique (nanopill), sensitivity (100%) and preparation (no preparation). Stated screening uptake for the nanopill was 79%, compared to 76% for iFOBT. In the case of screening with the nanopill, the percentage of people preferring not to be screened would be reduced from 19.2% (iFOBT) to 16.7%. Conclusions Although the expected benefits of nanotechnology based colorectal cancer screening are improved screening uptake, assuming more accurate test results and less preparation involved, the relative preference of the nanopill is only slightly higher than the iFOBT. Estimating user preferences during the development of diagnostic technologies could be used to identify relative performance, including perceived benefits and harms compared to competitors allowing for significant changes to be made throughout the process of developmen

Economic Perspectives on Personalized Health Care and Prevention

The objective of this paper is to provide an overview of economic evaluation of personalized medicine, focusing particularly on the use of cost-effectiveness analysis and other methods of valuation. We draw on insights from the literature and our work at the University of California, San Francisco Center for Translational and Policy Research on Personalized Medicine (TRANSPERS). We begin with a discussion of why personalized medicine is of interest and challenges to adoption, whether personalized medicine is different enough to require different evaluation approaches, and what is known about the economics of personalized medicine. We then discuss insights from TRANSPERS research and six areas for future research

Patient preferences of genomic testing in precision cancer medicine

Aims: The aim of this thesis was to identify and rate themed patient preference attributes of genomic testing in precision cancer medicine (PCM). The effect of clinical treatment intent and time since completing treatment was examined as a novel hypothesis that these factors influence identified preference attribute themes and/or ratings. This thesis then benchmarked the identified preference attributes against the ATLANTIS clinical trial design, in order to assess how a current clinical trial incorporates patient preferences. Methods: A narrative review of current cancer treatment paradigms was undertaken alongside systematic review of the literature assessing patient preferences of genomic testing in PCM. In addition, mixed methods research, using Nominal Group Technique (NGT), identified and rated preference attribute themes of genomic testing amongst cancer patients. These preference attributes were then benchmarked against genomic testing undertaken within the ATLANTIS clinical trial, to determine how a novel PCM study design incorporated the attributes. Results: Patient preferences of genomic testing in PCM are influenced by clinical treatment intent and time since completing treatment. Patients undergoing cancer treatment with radical intent demonstrated higher preference ratings for test sensitivity (true positive) and specificity (true negative). Invasiveness of testing and test turnaround time were higher rated preference attributes amongst patients undergoing treatment with palliative intent. Ten preference attribute themes of genomic testing were identified: regulatory/NHS approval, test turnaround time, invasiveness of testing, physician approval, test sensitivity (true positive), test specificity (true negative), prevalence of variant, distance to travel, implications for family and family endorsement for testing. The novel adaptive design of the ATLANTIS trial incorporated many of the preference attribute themes of genomic testing demonstrated in this thesis. Conclusions: Patient preferences of genomic testing in PCM are influenced by clinical treatment intent. This thesis identified and rated preference attribute themes of genomic testing for patients, as well as benchmarking these against a current UK PCM clinical trial. The adaptive design of the ATLANTIS trial incorporated many of the preference attributes, but does not allow for assessment of interaction between multiple inter-related attributes. The results of this thesis augment novel clinical trial design for studies incorporating genomic testing in order they retain patient-centred values at their core

Preferences for genetic testing to predict risk of developing hereditary cancer: A systematic review of discrete choice experiments

This is the final version. Available from SAGE Publications via the DOI in this record. Background. Understanding service user preferences is key to effective health care decision making and efficient resource allocation. It is of particular importance in the management of high-risk patients in whom predictive genetic testing can alter health outcomes. Purpose. This review aims to identify the relative importance and willingness to pay for attributes of genetic testing in hereditary cancer syndromes. Data Sources. Searches were conducted in Medline, Embase, PsycINFO, HMIC, Web of Science, and EconLit using discrete choice experiment (DCE) terms combined with terms related to hereditary cancer syndromes, malignancy synonyms, and genetic testing. Study Selection. Following independent screening by 3 reviewers, 7 studies fulfilled the inclusion criteria, being a DCE investigating patient or public preferences related to predictive genetic testing for hereditary cancer syndromes. Data Extraction. Extracted data included study and respondent characteristics, DCE attributes and levels, methods of data analysis and interpretation, and key study findings. Data Synthesis. Studies covered colorectal, breast, and ovarian cancer syndromes. Results were summarized in a narrative synthesis and the quality assessed using the Lancsar and Louviere framework. Limitations. This review focuses only on DCE design and testing for hereditary cancer syndromes rather than other complex diseases. Challenges also arose from heterogeneity in attributes and levels. Conclusions. Test effectiveness and detection rates were consistently important to respondents and thus should be prioritized by policy makers. Accuracy, cost, and wait time, while also important, showed variation between studies, although overall reduction in cost may improve uptake. Patients and the public would be willing to pay for improved detection and clinician over insurance provider involvement. Future studies should seek to contextualize findings by considering the impact of sociodemographic characteristics, health system coverage, and insurance policies on preferences

HEALTH ECONOMICS OF PHARMACOGENETIC TESTING

Ph.DDOCTOR OF PHILOSOPH