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

Abstract

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.

Factors Associated With Engagement With a Web-Based Lifestyle Intervention Following Provision of Coronary Heart Disease Risk: Mixed Methods Study

“…Face-to-face interviews with a purposive sample of 41 participants were conducted as part of the INFORM trial by an experienced qualitative researcher (GS). Full details of the recruitment and methods are reported in detail elsewhere [ 23 ]. Briefly, in order to sample participants who could provide the richest data on the primary trial question, participants who received medium to high risk scores (a 10-year CHD risk >10% or heart age at least two years older than their real age) were mainly selected.…”

“…The Information and Risk Modification (INFORM) Trial [ 22 ] was a randomized controlled trial comparing the impact of providing phenotypic and genetic CHD risk scores alongside a Web-based lifestyle intervention. In additional to behavioral outcomes, INFORM included quantitative measurements of engagement with the Web-based lifestyle intervention and a nested qualitative study with face-to-face individual interviews with participants throughout the trial [ 23 ]. The aims of this study were to use the data from the face-to-face interviews to explore the factors associated with different levels of engagement with the Web-based intervention, and the barriers and facilitators to engagement in general.…”

Informing on individual cardiovascular risk: from wishful thinking to hard facts

“…It should rather be considered an incentive to address the question from a different perspective. The above-mentioned qualitative study3 revealed that the calculated risk scores provided as percentages to the INFORM participants were usually lower than expected, rarely perceived as meaningful—especially genetic risk scores—and mostly overlooked. Genetic scores may even elicit fatalistic attitudes with a risk perceived as unmodifiable, thus suggesting that lifestyle changes would be pain without gain.…”

“…In fact, the lack of difference before and after information within each group might hide diverging trends according to the interplay of expected risk, actual risk and individual psychological vulnerability. Indeed, a qualitative analysis3 highlighted how variable was the psychological response of INFORM participants to the information they were provided with.…”

“…In the INFORM trial, ‘heart age’ (ie, the mean age of individuals with a similar risk) seemed to be more powerful in motivating lifestyle changes than risk estimates displayed as percentages 3. By depicting risk, a notion associated with both uncertainty and delay, as a ‘here and now’ measurement, ‘heart age’ may help individuals to overcome the tendency of the human mind to prefer smaller, sooner rewards to larger, later ones.…”