Background
Methods/Design
The trial
The intervention
The qualitative data collection
Analysis
Results
Interviews and focus groups recruitment
Interviews | Focus group | |
---|---|---|
n = 41 | n = 13 | |
Gender | ||
Male | 23 | 9 |
Female | 18 | 4 |
Age (years) | ||
40–49 | 8 | 3 |
50–59 | 15 | 4 |
60–69 | 13 | 5 |
70–80 | 5 | 1 |
Study group | ||
4 (genetic + phenotypic risk + lifestyle advice) | 22 | 8 |
3 (phenotypic risk + lifestyle advice) | 15 | 5 |
2 (lifestyle only) | 4 | 0 |
Mean (range) phenotypic risk score (% 10 year risk) | ||
Male | 12.6 (4–62) | 6.6 (4–12) |
Female | 4.5 (1–11) | 0.9 (1–2) |
Marital status | ||
Married | 28 | 10 |
Separated or Divorced | 3 | 1 |
Widowed | 3 | 0 |
Single | 7 | 2 |
Level of Education | ||
No Formal education | 1 | 0 |
Secondary education | 17 | 5 |
University education | 23 | 8 |
Findings
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➢ Partial noticing and understanding of the risk scores: four interview and two focus group participants did not remember receiving risk scores at all (our website records indicated that all the interview and focus group participants from groups 3 and 4 had accessed their risk score page). Four others had only a vague recollection of the risk score. Additionally, most of those who did remember a risk score were able to recall only one format of presentation, typically an absolute risk score expressed as a percentage. Noticing a percentage risk score without noticing any additional comparative information, meant that whether this was perceived as a high or low risk was largely dependent on the participants’ own preconceptions or on other lay persons opinion. For example, a woman in her early 70s with a phenotypic risk score of 9% remembered she received a risk score of 8%. When asked how did she feel about it she said: “I was quite concerned but my husband didn’t think was very high!” and later added that she was convinced by him that it was not high. Another participant, also female with a phenotypic risk score of 11 thought it was a ‘decent score’. She did not notice her ‘heart age’ which was eight years older than her real age.
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➢ Overestimation of own risk before the intervention: Many of the participants held overestimating preconceptions about their risk. For example, while the mean of the actual phenotypic risk score given to male interviewees was 11.2%, their mean self-predicted score at baseline was 33.1%. Among female participants this was even more evident, with a mean calculated risk score of 3.5% and a mean self-predicted score of 29.5%.
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➢ High threshold for what is a high risk: when we asked participants who thought that their risk score was fine what would constitute a high risk in their view, 11 referred to 50% (another commonly mentioned threshold was 10% although there were participants who could not name any threshold). Given this, it is not surprising that risk scores of 10% or lower, and for some over 20%, were not considered concerning. The question of what is a high risk is of course subjective, but some of the explanations given by some participants as to why they felt a risk below 50% was not concerning were quite telling and suggested an vague understanding of probability and risk. For example, one participant commented: ‘[If the risk score is] over half way I should probably do something about it’ (male participant in his 60s, with phenotypic risk score of 12% and genetic risk score of 13%), another said that ‘to be in the top half sounds bad’ (female interviewee in her 40s with a phenotypic and genetic risk score of 1%). One participant said specifically that ‘I tend to interpret it as being obviously a percentage of the population, so 5% risk to me is low. If it was like 50% then that’d be different’ (male interviewee in his 50s with a phenotypic risk score of 8 and genetic risk score of 6).
“I’m just thinking if you have a high genetic risk it’s in your genes, yes lifestyle has an impact but you’ve got it in your genes, what happens then if you die because of the genes? You’ve in a sense exercised yourself potty, deprived yourself of all your nice treats but you’ve still had the same end result. You might as well have enjoyed it and gone!”
“It gives you an opportunity to set your own target. So you can make it as big a step or as small a step as you like. It’s flexible and there’s nobody going to be there with a, you know, a knife in your back if you don’t do it, you know, there’s nobody looking over your shoulder and saying, ‘You didn’t do such and such a thing’.
I thought it was pretty good, it was better than I expected. I did wonder if it was going to lecture me or try to frighten me, but I thought it was quite easy to use, it was clear, the information was there and it didn’t sort of judge you or anything. So I thought it was quite good and I did the whole thing and that was fine, yeah.