Introducing genetic testing for cardiovascular disease in primary care: a qualitative study

Middlemass, Jo; Yazdani, Momina; Kai, Joe; Standen, Penny; Qureshi, Nadeem

doi:10.3399/bjgp14x679714

Cited by 15 publications

(15 citation statements)

References 36 publications

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“…A sample size of between 30 and 35 male and female participants will be selected purposively, mainly from the intervention arms to include people with various demographic backgrounds. This sample size is common for this kind of study [ 57 , 58 ] and is consistent with the time resources required for this type of data analysis and the predicted range of number of interviews required for achieving saturation.…”

Section: Methodssupporting

confidence: 54%

Information and Risk Modification Trial (INFORM): design of a randomised controlled trial of communicating different types of information about coronary heart disease risk, alongside lifestyle advice, to achieve change in health-related behaviour

Šilarova

Lucas²,

Butterworth³

et al. 2015

BMC Public Health

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BackgroundCardiovascular disease (CVD) remains the leading cause of death globally. Primary prevention of CVD requires cost-effective strategies to identify individuals at high risk in order to help target preventive interventions. An integral part of this approach is the use of CVD risk scores. Limitations in previous studies have prevented reliable inference about the potential advantages and the potential harms of using CVD risk scores as part of preventive strategies. We aim to evaluate short-term effects of providing different types of information about coronary heart disease (CHD) risk, alongside lifestyle advice, on health-related behaviours.Methods/DesignIn a parallel-group, open randomised trial, we are allocating 932 male and female blood donors with no previous history of CVD aged 40–84 years in England to either no intervention (control group) or to one of three active intervention groups: i) lifestyle advice only; ii) lifestyle advice plus information on estimated 10-year CHD risk based on phenotypic characteristics; and iii) lifestyle advice plus information on estimated 10-year CHD risk based on phenotypic and genetic characteristics. The primary outcome is change in objectively measured physical activity. Secondary outcomes include: objectively measured dietary behaviours; cardiovascular risk factors; current medication and healthcare usage; perceived risk; cognitive evaluation of provision of CHD risk scores; and psychological outcomes. The follow-up assessment takes place 12 weeks after randomisation. The experiences, attitudes and concerns of a subset of participants will be also studied using individual interviews and focus groups.DiscussionThe INFORM study has been designed to provide robust findings about the short-term effects of providing different types of information on estimated 10-year CHD risk and lifestyle advice on health-related behaviours.Trial registrationCurrent Controlled Trials ISRCTN17721237. Registered 12 January 2015.Electronic supplementary materialThe online version of this article (doi:10.1186/s12889-015-2192-5) contains supplementary material, which is available to authorized users.

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Section: Methodssupporting

confidence: 54%

Information and Risk Modification Trial (INFORM): design of a randomised controlled trial of communicating different types of information about coronary heart disease risk, alongside lifestyle advice, to achieve change in health-related behaviour

Šilarova

Lucas²,

Butterworth³

et al. 2015

BMC Public Health

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“…We only found two studies performed outside the USA (both in Great Britain) on a somewhat similar topic. One examined the acceptability of genetic testing for coronary heart disease risk among rural patients in Nottingham (Middlemass et al 2014). The other discussed the implementation of an information technologybased cancer risk assessment in rural Somerset with related access to genetic testing (Tozer and Lugton 2007).…”

Section: Discussionmentioning

confidence: 99%

Knowledge, attitudes, and perceived barriers towards genetic testing across three rural Illinois communities

et al. 2019

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Genetic testing is becoming more prevalent in detecting risk and guiding cancer treatment in our increasingly personalized medicine model. However, few studies have examined underserved populations' perceptions of genetic testing, especially those of rural dwelling populations. We asked residents of three rural communities to complete a self-administered survey gauging their knowledge, attitudes, and perceived barriers for genetic testing. 64.8% of participants of the overall study completed the survey. Most participants were aware of genetic testing for cancer screening (69.0%) and would likely share results with their family (88.5% if it indicated low risk, 85.9% for high risk). Some barriers were noted, including genetic testing not offered in a clinic nearby (46.9%), insurance company knowing the results (54.0%), cost (49.1%), and no accessible genetic counselors with whom to discuss results (45.6%). Our rural participants were generally knowledgeable about genetic testing, but this may not be reflective of all rural populations. Opportunities exist to mitigate use barriers, expand the utilization of telehealth services and regulatory agency-approved assays, and increase knowledge regarding privacy and protections offered by statute, such as the Genetic Information Nondiscrimination Act (US) and General Data Protection Regulation (Europe).

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“…The small number of studies involving the general public have focused on their immediate reaction to risk information in order to identify either their preferences regarding different formats of presentations [38], or their prediction of its potential impact on their future decision making [39]. Only one recent qualitative study focused on the impact of providing genetic risk information [40]. …”

Section: Introductionmentioning

confidence: 99%

The response to receiving phenotypic and genetic coronary heart disease risk scores and lifestyle advice – a qualitative study

et al. 2016

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BackgroundIndividuals routinely receive information about their risk of coronary heart disease (CHD) based on traditional risk factors as part of their primary care. We are also able to calculate individual’s risk of CHD based on their genetic information and at present genetic testing for common diseases is available to the public. Due to the limitations in previous studies further understanding is needed about the impact of the risk information on individual’s well-being and health-behaviour. We aimed to explore the short term response to receiving different forms of CHD risk information and lifestyle advice for risk reduction.MethodsWe conducted fourty-one face-to-face interviews and two focus groups across England with participants from the INFORM trial who received a combination of individualised phenotypic and genotypic CHD risk scores and web-based lifestyle advice. Risk scores were presented in different formats, e.g. absolute 10 year risk was presented as a thermometer and expressed as a percentage, natural frequency and ‘heart age’. Interviews and focus groups explored participants’ understanding and reaction to the risk scores and attempts to change lifestyle during the intervention. We tape-recorded and transcribed the interviews and focus groups and analysed them using thematic analysis.ResultsThree main themes were identified: limitations of risk scores to generate concern about CHD risk; the advantages of the ‘heart age’ format of risk score presentation in communicating a message of sub-optimal lifestyle; and intentions and attempts to make moderate lifestyle changes which were prompted by the web-based lifestyle advice.ConclusionsThere are a number of limitations to the use of risk scores to communicate a message about the need for a lifestyle change. Of the formats used, the ‘heart age’, if noticed, appears to convey the most powerful message about how far from optimal risk an individual person is. An interactive, user friendly, goal setting based lifestyle website can act as a trigger to initiate moderate lifestyle changes, regardless of concerns about risk scores.Trial registrationCurrent Controlled Trials ISRCTN17721237. Registered 12 January 2015.Electronic supplementary materialThe online version of this article (doi:10.1186/s12889-016-3867-2) contains supplementary material, which is available to authorized users.

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Introducing genetic testing for cardiovascular disease in primary care: a qualitative study

Cited by 15 publications

References 36 publications

Information and Risk Modification Trial (INFORM): design of a randomised controlled trial of communicating different types of information about coronary heart disease risk, alongside lifestyle advice, to achieve change in health-related behaviour

Information and Risk Modification Trial (INFORM): design of a randomised controlled trial of communicating different types of information about coronary heart disease risk, alongside lifestyle advice, to achieve change in health-related behaviour

Knowledge, attitudes, and perceived barriers towards genetic testing across three rural Illinois communities

The response to receiving phenotypic and genetic coronary heart disease risk scores and lifestyle advice – a qualitative study

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