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

ABSTRACT: 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).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.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.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.

SUBMITTER: Buchanan J

PROVIDER: S-EPMC5107190 | biostudies-other | 2016 Dec

REPOSITORIES: biostudies-other

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

Buchanan James J Wordsworth Sarah S Schuh Anna A

The patient 20161201 6

<h4>Background</h4>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).<h4>Methods</h4>We used a discrete choice experiment (DCE) survey to assess the preferences of CLL patients in the UK for genomic tes ...[more]

PMID: 27167075

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Project description:BackgroundThe extent to which a genomic test will be used in practice is affected by factors such as ability of the test to correctly predict response to treatment (i.e. sensitivity and specificity of the test), invasiveness of the testing procedure, test cost, and the probability and severity of side effects associated with treatment.MethodsUsing discrete choice experimentation (DCE), we elicited preferences of the public (Sample 1, N = 533 and Sample 2, N = 525) and cancer patients (Sample 3, N = 38) for different attributes of a hypothetical genomic test for guiding cancer treatment. Samples 1 and 3 considered the test/treatment in the context of an aggressive curable cancer (scenario A) while the scenario for sample 2 was based on a non-aggressive incurable cancer (scenario B).ResultsIn aggressive curable cancer (scenario A), everything else being equal, the odds ratio (OR) of choosing a test with 95% sensitivity was 1.41 (versus a test with 50% sensitivity) and willingness to pay (WTP) was $1331, on average, for this amount of improvement in test sensitivity. In this scenario, the OR of choosing a test with 95% specificity was 1.24 times that of a test with 50% specificity (WTP = $827). In non-aggressive incurable cancer (scenario B), the OR of choosing a test with 95% sensitivity was 1.65 (WTP = $1344), and the OR of choosing a test with 95% specificity was 1.50 (WTP = $1080). Reducing severity of treatment side effects from severe to mild was associated with large ORs in both scenarios (OR = 2.10 and 2.24 in scenario A and B, respectively). In contrast, patients had a very large preference for 95% sensitivity of the test (OR = 5.23).ConclusionThe type and prognosis of cancer affected preferences for genomically-guided treatment. In aggressive curable cancer, individuals emphasized more on the sensitivity rather than the specificity of the test. In contrast, for a non-aggressive incurable cancer, individuals put similar emphasis on sensitivity and specificity of the test. While the public expressed strong preference toward lowering severity of side effects, improving sensitivity of the test had by far the largest influence on patients' decision to use genomic testing.

Project description:OBJECTIVES:It is desirable that public preferences are established and incorporated in emergency healthcare reforms. The aim of this study was to investigate preferences for local versus centralised provision of all emergency medical services (EMS) and explore what individuals think are important considerations for EMS delivery. DESIGN:A discrete choice experiment was conducted. The attributes used in the choice scenarios were: travel time to the hospital, waiting time to be seen, length of stay in the hospital, risks of dying, readmission and opportunity for outpatient care after emergency treatment at a local hospital. SETTING:North East England. PARTICIPANTS:Participants were a randomly sampled general population, aged 16 years or above recruited from Healthwatch Northumberland network database of lay members and from clinical contact with Northumbria Healthcare National Health Service Foundation Trust via Patient Experience Team. PRIMARY AND SECONDARY OUTCOME MEASURES:Analysis used logistic regression modelling techniques to determine the preference of each attribute. Marginal rates of substitution between attributes were estimated to understand the trade-offs individuals were willing to make. RESULTS:Responses were obtained from 148 people (62 completed a web and 86 a postal version). Respondents preferred shorter travel time to hospital, shorter waiting time, fewer number of days in hospital, low risk of death, low risk of readmission and outpatient follow-up care in their local hospital. However, individuals were willing to trade off increased travel time and waiting time for high-quality centralised care. Individuals were willing to travel 9 min more for a 1-day reduction in length of stay in the hospital, 38 min for a 1% reduction in risk of death and 112 min for having outpatient follow-up care at their local hospital. CONCLUSIONS:People value centralised EMS if it provides higher quality care and are willing to travel further and wait longer.

Project description:Choosing hypodontia treatment requires young people and parents to consider a large amount of information, identify what is important to them, and make trade-offs between options. This study aimed to examine young people and parents' preferences for hypodontia treatment using discrete choice experiment (DCE). This was a cross-sectional survey of young people (12-16 y) with hypodontia of any severity, at any stage of treatment, and their parents. Participants were recruited from NHS Hospitals in England and Wales. A bespoke DCE questionnaire was developed to measure preferences for 6 attributes of hypodontia treatment (waiting time, treatment time, problems during treatment, discomfort during treatment, bite, appearance). The questionnaire was completed 1) online by young people and parents, individually or together, and 2) by child-parent dyads under observation. Preferences were analyzed using regression models. In total, 204 participants (122 young people, 56 parents, 26 dyads) completed the online questionnaire and 15 child-parent dyads completed the questionnaire under observation. The most important attribute in hypodontia treatment was improvement in appearance, but significant heterogeneity was found in preferences. Four distinct groups of participants were found: group 1 (39%): severe discomfort and problems were most important; group 2 (31%): most concerned about improvement in appearance of teeth and improvement in bite; group 3 (22%): appearance 3 times more important than any other attribute; and group 4 (9%): preferences difficult to interpret. There was variation in how child-parent dyads approached decision-making, with some negotiating joint preferences, while for others, one individual dominated. Making trade-offs in DCE tasks helped some people think about treatment and identify their preferences. Appearance is an important outcome from hypodontia treatment, but preferences vary and potential risks and functional outcome are also important to some people. There is a notable level of uncertainty in decision-making, which suggests further shared decision support would be valuable.

Project description:BACKGROUND: Guidelines underline the role of individual preferences in the selection of a screening test, as insufficient evidence is available to recommend one screening test over another. We conducted a study to determine the preferences of individuals and to predict uptake for colorectal cancer (CRC) screening programmes using various screening tests. METHODS: A discrete choice experiment (DCE) questionnaire was distributed among naive subjects, yet to be screened, and previously screened subjects, aged 50-75 years. Subjects were asked to choose between scenarios on the basis of faecal occult blood test (FOBT), flexible sigmoidoscopy (FS), total colonoscopy (TC) with various test-specific screening intervals and mortality reductions, and no screening (opt-out). RESULTS: In total, 489 out of 1498 (33%) screening-naïve subjects (52% male; mean age+/-s.d. 61+/-7 years) and 545 out of 769 (71%) previously screened subjects (52% male; mean age+/-s.d. 61+/-6 years) returned the questionnaire. The type of screening test, screening interval, and risk reduction of CRC-related mortality influenced subjects' preferences (all P<0.05). Screening-naive and previously screened subjects equally preferred 5-yearly FS and 10-yearly TC (P=0.24; P=0.11), but favoured both strategies to annual FOBT screening (all P-values <0.001) if, based on the literature, realistic risk reduction of CRC-related mortality was applied. Screening-naive and previously screened subjects were willing to undergo a 10-yearly TC instead of a 5-yearly FS to obtain an additional risk reduction of CRC-related mortality of 45% (P<0.001). CONCLUSION: These data provide insight into the extent by which interval and risk reduction of CRC-related mortality affect preferences for CRC screening tests. Assuming realistic test characteristics, subjects in the target population preferred endoscopic screening over FOBT screening, partly, due to the more favourable risk reduction of CRC-related mortality by endoscopy screening. Increasing the knowledge of potential screenees regarding risk reduction by different screening strategies is, therefore, warranted to prevent unrealistic expectations and to optimise informed choice.

Dataset Information

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

Publications

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

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