Participants' accounts of their screening experience showed how their perceptions of type 2 diabetes and their own personal risk changed over the course of the stepwise screening programme (box 1). Participants seemed to undergo a process of psychological adjustment, typically from attending the first screening test without considering its implications, to the final test where they confronted the possibility of having diabetes, as demonstrated by these contrasting quotes:
Patient 5 (male, impaired glucose tolerance, age 69) “I wasn't concerned at all, you know I thought, well I'll just go along and if I can help well okay all well and good, go and see what happens.”
Patient 18 (female, impaired glucose tolerance, age 64) “So I go for number one, I go for number two and then I have to go to number three. So it's a build up all the time, making me think, well OK there's a possibility you know . . . there's a strong possibility you know' in that sense [. . .] you've gone through the three, so your brain's adjusted anyway.”
Initial stages of the screening process
Participants' reflections on the initial ADDITION invitation letter highlighted an unquestioning perception of screening being “good” (box 3). Most participants seemed to have considered the initial test “routine” and thought little about the implications of the possible results, an attitude typified by one patient's comment that “it can only be a good thing.” Attenders rarely expected to test positive, except for one woman who had a family history of diabetes. At this point in the screening process, some participants drew attention to their perceived lack of risk factors such as not having a sweet tooth, whereas others downplayed risk factors such as being overweight. Some participants did not know why they had been invited.
Box 3 Typical perceptions at initial stages of the screening process
Screening is good
- Patient 8 (male, impaired glucose tolerance, age 64) “I didn't really think too much about it 'cause I'm a great believer in preventive medicine if you like. It's like preventive maintenance on the car 'cause if you do it beforehand it saves you a lot of problems later down the line”
- Patient 102 (female, random blood glucose only, age 69) “I mean it's only been a pin prick up to now hasn't it?”
Expectations of initial test results
- Patient 2 (male, type 2 diabetes, age 67) “I honestly thought I'd have a clear, I can't remember ever suffering from anything, effects of diabetes or anything. I'm grossly overweight but apart from that”
- Patient 17 (female, normal, age 58) “I thought I'll just go along and I'd no reason to think there might be anything [diabetes] . . . I've never had a particularly sweet tooth”
- Patient 4 (female, type 2 diabetes, age 58) “I had been given these tests before from my doctor, because of my family. My grandmother and grandfather both had diabetes and nine out of their 11 children had it, including my mother. And my cousins have got it so I would not be surprised if—it wouldn't be a shock anyway”
Reflections on reason for being invited
- Patient 11 (male, type 2 diabetes, age 55) “I suppose the criteria they put forward was over 40 and overweight . . . I certainly unfortunately fit into that”
- Patient 3 (male, normal, age 69) “No. No. I don't know why I was invited, I think maybe it's because I've had hypertension 'cause they say that it can lead to diabetes, I don't know”
- Patient 103 (male, random blood glucose only, 53) “It just said in the letter that I was just picked at random”
- Patient 3 (male, normal, age 69) “I know it [random blood glucose] was quite high. But I'd had rather a big meal the night before [. . .] a great big plate of ice cream and two bananas which I imagine put the blood sugar up quite a lot”
- Patient 5 (male, impaired glucose tolerance, age 69) “I was surprised at that initial test, that it was higher than the ones I've been doing here, but I thought, well these things happen. And I know with my wife at times her readings do fluctuate”
- Patient 1 (male, type 2 diabetes, age 61) “[The nurse] said, ‘You'll probably be quite all right but you're on the borderline so we'll get you back just in case'”
Prediagnostic test expectations
- Patient 2 (male, type 2 diabetes, age 67) “I've set my mind that I will probably fail (be diagnosed) tomorrow. But if you catch it early enough you can probably get rid of most of it just by dieting or looking after [yourself]”
- Patient 1 (male, type 2 diabetes, age 61) “If I have got diabetes or any form of diabetes, it's very light anyway, you can control it quite easily. It's not—I don't think for one minute I've got it life threatening. I would be dead by now wouldn't I?”
- Patient 8 (male, impaired glucose tolerance, age 64) “My cousin's wife went along [. . .] but it was off the Richter scale. I mean [her blood glucose level] was like 31 for Christ's sake. And even now with it controlled . . . it's about 13. I said, “No I was something like 7.1 I think or 7”
- Patient 6 (male, impaired fasting glucose, age 50) “Obviously I hope I'm not diabetic and have to inject myself. I've got a couple of friends who are diabetic that do that. But it doesn't seem to have slowed them up too much or worry them”
Most participants who tested positive on the first occasion reported being “not unduly worried.” A high random blood glucose concentration was often attributed to the food consumed for breakfast or the previous evening, or a healthy fluctuation. Participants typically reported expecting the next (fasting) test to be negative. Indeed the participants interviewed after the first test all said they were not worried. Accounts of the health professionals' reassuring manner in giving results, particularly their use of the term borderline, seemed to contribute to this lack of concern in some cases.
Prediagnostic test expectations
After testing positive at the second (fasting) test some participants still expected to test negative at the oral glucose tolerance test, one hypothesising that the large number of patients referred for this test meant that only a few would be diabetic. Others had moved to accepting the possibility of type 2 diabetes, albeit a “mild” easily controlled type, often justifying this belief on the absence of symptoms.
All but one participant interviewed before their oral glucose tolerance test seemed to have taken in information about type 2 diabetes from the media or from health professionals, friends, and family at this stage. Some participants (without a family history) had identified people with type 2 diabetes within their own networks, sometimes using them as a benchmark against which to make favourable comparisons. Others reported how diabetes did not seem to affect their friends' lives, furthering positive perceptions of it being a controllable condition.
Reactions after diagnosis (box 4)
Newly diagnosed type 2 diabetes
The most common reaction to being diagnosed with type 2 diabetes was to downplay its importance; only one participant reported shock. Testing positive at the first two tests seemed to lead participants to adjust their expectations from testing negative to an increased likelihood of having diabetes. A few participants reported symptoms, previously not considered relevant (such as tiredness and thirst), that they now linked to type 2 diabetes.
Box 4 Reaction to diagnosis
Type 2 diabetes
- Patient 9 (female, age 58) “Last time I saw you when we'd done the first interview, I think I was quite sort of blasé . . . since I've been diagnosed I'm trying to get my head around it, and I'm finding it difficult. [. . .] To put it plainly I'm scared”
- Patient 10 (male, age 66) “I rather suspected that once having got as far as having to go to [hospital], that [type 2 diabetes] was gonna be the outcome”
- Patient 16 (female , age 63) “And I think there's—that was where the tell-tale sign that I had trouble . . . [my husband] used to say to me, ‘you drink too much bloomin' water'”
- Patient 10 (male, age 66) “It's not like you're being told you've got cancer, it's only diabetes for goodness sake innit? I mean, I must admit that everybody else seems to be taking it much more seriously than I am”
- Patient 2 (male, age 67) “He [general practitioner] explained that people call it a mild form of the actual thing. But it wasn't mild, that was wrong, it was a type. And there was two ways of controlling it which was either tablets or diet, and they decided to go on the diet this time with me” . . . “and if that don't work well obviously it's medication. But . . . I'm quite confident that in myself that the diet will control it”
- Patient 1 (male, age 61) “If it wasn't for [ADDITION] it wouldn't have been picked up when it was, which means in a few years time I could be in some mess and it would be far too late to do anything then”
- Patient 3 (male, normal, age 69) “I didn't really think that I'd got diabetes, 'cause I mean you can usually get symptoms don't you?”
- Patient 13 (male, impaired fasting glucose, age 69) “There was one little glitch where something showed up and it was very technical, about how quickly the blood can absorb sugar or something”
- Patient 14 (male, impaired glucose tolerance, age 69) “I come out okay, well I come out—I come out with glucose intolerance, glucose impaired tolerance, which is below, right? It means you're not diabetic but you could be—if you go down the path of—you know—that will bring you to it. And lots of people have got it haven't they?”
- Patient 15 (male, impaired glucose tolerance, age 53) “He [general practitioner] said, ‘Yeah, you're fine, no problem . . . You've got a slight intolerance to glucose . . . No problem, you're just like the man next door.' I said, ‘Yeah, but it all depends on what the man next door's like doesn't it?'”
- Patient 5 (male, impaired glucose tolerance, age 69) “I suppose depending upon what I eat and do and that sort of thing. I suppose that's the things that affect it and . . . I suppose could tip it over into being a positive reading then”
The one participant to describe shock was also afraid about the severe consequences of type 2 diabetes. In contrast, the rest emphasised the lack of severity they associated with the disease. All newly diagnosed patients talked confidently about their plans to control the disease; in some cases a diet-only regimen fuelled the perception that their diabetes was mild. Furthermore, most of this group reported being grateful that the screening programme had identified their diabetes at a treatable stage; indeed one patient described it as “a wake up call” to change his lifestyle.
Intermediate and negative results
Participants with intermediate (impaired fasting glucose or impaired glucose tolerance) or negative oral glucose tolerance test results suggested that they had known they did not have diabetes despite their earlier high readings. Some stated that they would have been surprised if they had been diagnosed, which contrasts with the lack of surprise reported by those who were. Often this belief was reinforced by lack of symptoms, despite being apparently aware of the disease's early asymptomatic period.
Many participants diagnosed with an intermediate condition seemed confused. They appeared to be unaware of this diagnostic label or struggled to explain its meaning, or had received seemingly confused messages from their general practitioner. Most patients seemed unconcerned by their result, often normalising the condition, and reported feeling reassured by their general practitioner or nurse who had recommended simply annual checks. This diagnosis had not triggered lifestyle change even in those who had expressed intentions to change if diagnosed with type 2 diabetes in the pretest interview. For example, one patient said before his oral glucose tolerance test, “One knows there's a chance of it and I think one can then say, right, well if that's the case how do I deal with it and try and take sensible precautions.” But after diagnosis he said, “And so I was relieved not to have to have something else to worry about.”
Only one participant, unhappy with his general practitioner's explanation, wanted further information about impaired glucose tolerance. Participants diagnosed with intermediate conditions had mixed views about their likelihood of getting type 2 diabetes in the future. Some patients accepted that lifestyle change would affect their risk of developing diabetes, but none appeared to be aware of the risk of cardiovascular disease associated with impaired fasting glucose or impaired glucose tolerance.