Background
Methods
Participants and devices
Qualitative study design
Data collection and analysis
Results
Participants with type 1 diabetes (n = 15) | ||
Gender, female (n,%) | 7(46.7) | |
Age at recruitment (years) | ||
13–15 | 3 | |
16–20 | 2 | |
21–30 | 1 | |
31–40 | 6 | |
41–50 | 2 | |
51–60 | ||
60+ | 1 | |
Occupation/education (n,%) | ||
Professional | 5(33.3) | |
Semi-skilled | 4(26.7) | |
Retired | 1(6.7) | |
Higher education | 2(13.3) | |
Secondary school | 3(20) | |
Self-reported diabetes duration (mean, SD, range - years) | ||
≤12 years | 4 ± 2.9 (2–9) | |
13–17 | 9.25 ± 3.9 (4.5–13.75) | |
18+ | 25 ± 11.1 (15–45) | |
Sensor use run-in (% over 4 weeks) | ||
≤12 years | 81.2 ± 13.8 (64–99) | |
13–17 | 85.6 ± 10.8 (77–98) | |
18+ | 89.9 ± 6.4 (77–97) | |
Parents of paediatric patients (n = 9)a | ||
Gender, female (n,%) | 7(77.8) | |
Age at recruitment (years) | ||
31–40 | 2 | |
41–50 | 5 | |
51–60 | 2 | |
Occupation (n,%) | ||
Professional | 5(55.6) | |
Semi-skilled | 3(33.3) | |
Unemployed/Full time Carer | 1(11.1) |
Ease of access to continuous data
“It’s so much easier with anything isn’t it, where you can just glance at it. It’s, you know, if to tell the time, rather than just glancing at your watch you had to sort of get something out, open it up, fiddle around with it, you wouldn’t worry so much about checking the time, would you?” (Parent 6)
“it’s [SMBG] frustrating.. cause you don’t know what’s happening … it’s like walking around with a blindfold on. And you can walk into a room every now and then and take the blindfold off for 60 seconds. And then you have to put it back on.”
Predicting and managing the future
“if she [teenaged daughter] says: ‘oh I don’t feel quite right’, she can glance at it and think: ‘oh yeah I’m going high and I’ve got an arrow going straight up’. So she can then say: ‘oh yeah, actually I need to actually put a bolus in’. And equally if she’s got an arrow going straight down, she can say: ‘actually although I’m six, I’ve got an arrow going straight down. So I need something [to eat] within the next 20 minutes, half an hour, otherwise I’m gonna hypo’. So that’s good. You can almost stop things happening before they get to the critical point.” (Parent 6)
“It’s easier to do the stuff I wanna do, because I can read my pump. I can see: am I going up? Am I going down? Should I have lunch before I do this? Or can I do this before lunch kind of thing?... [using CGM] I can say: oh we’ll have lunch in half an hour. Or I can- I’ll just finish what I’m doing, or. So I think it’s giving me more personal freedom if you like.” (Participant 2)“Yes, the arrow- well that’s good for going low. Em, it’s a good- great indicator to see that it’s- my sugars are actually- they’re dropping a little bit faster than I expected. They’re maybe dropping according to the graphs, but dropping a lot faster. Em, it means I can get, if I’m out for a walk with the dog, I can think: okay. Right I need to cut the walk short, because I’m going to go low otherwise.” (Participant 7)
“they told me what the arrows mean… But I‘ve- I’ve kind of taken it upon myself to interpret that into three arrows and active insulin, get something quick, and quick-acting. Em so I’ve kind of used what I think is my best judgement on that.” (Participant 9)
Understanding the impact of lifestyle and insulin on blood glucose levels
“when I’d be treating a low, before I just thought I’ll just eat and eat. And, obviously the sensor showed me that when I did that I would just bounce way way back up, too high, because before, you know, I couldn’t physically see [this] on my pump with the arrows .. So now I know that I just- I can’t eat- I just don’t need to eat as much. I don’t need to panic as much.”
“So when I’ve used the pump to correct for it [high blood glucose] and I can see [from ‘real time’ CGM data], well actually I probably won’t need to, I can probably be a bit more patient and wait for it to catch up. And that’s quite helpful because that means I am less likely to have a hypo as a result of overcorrecting.”
“she herself, off her own back, has been able to see, physically see on the line, where something has affected her blood sugar. Whereas before it will have affected it, and, you know, we treat it. But .. cause it’s a visual line she can see, that eating something’s gonna make her shoot up- it’s kind of- I think it’s struck a chord, in that she’s going: ‘well actually, that’s not really that good’. So she’s making conscious decisions in what she chooses to eat, without any kind of enforcement or- or guiding… changed the type of breakfast she has, so that she- she’s been having more smoothies rather than these high sugar, carby breakfasts.”
Using the past to improve the future; retrospective analysis of data
“And you can see what the history’s like and the trends and stuff. And I find that really, really helpful, because it’s like looking back over the period you’ve been asleep. And you can see what your blood sugar’s been doing... Sometimes you go to bed with a really normal blood sugar and you wake up and it’s normal. But over the night it’s just done this. And it’s like: ‘Wow’. Before I would have thought: ‘ah pretty good control really (laughs). But there’s something weird happening in the middle of the night.’” (Participant 14)
“So you know, retrospectively you can look up the past couple of weeks and have a look at each day and you can see much better the patterns that come from your blood sugars and then you can adjust your insulin far more easily. … if you can see a pattern from the CGM charts I can change those instantly, the basal patterns and the ratios far more easily.. to get better stable control.” (Participant 3)
“Em, but since I’ve had the sensor, because I’ve got continuous points I’m getting a nice clean graph, rather than working off five or six points a day. So I’m able to make a lot better decision, rather than having to check my sugars every 30 minutes to try to get a nice trend pattern, I’m now getting a really good set of results that I can work off.” (Participant 7)
Independent and dependent adjustments
“It’s quite- a quite complicated set up. So yes I have different basal rates, for different times. And we do change that. I don’t change it on my own...it’s not something I’d do without talking to some other clever girls…. only because I think it is so fundamental of my regime, that I would be worried about changing it without understanding 100% if it should be up or down. So it’s more insecurity I think, of my own knowledge about the basal.” (Participant 2)“I see the consultant or the nurse often enough to do that with them…I wouldn’t feel that comfortable messing with- the insulin ratio- your insulin to carb ratios… because the ability to look at the data is less so than in the clinic, if that makes sense.” (Participant 4)
“because I can see so many more variants in the line it makes me more determined to try and work out how to prevent, like monitor and check and find out why we have spikes and troughs … I’m at the stage- where at the moment I can do one change at a time. I know it just made me more determined to wanna be able to be in more control with her, working out what settings need changing, which is why I asked (names hospital) if they could give me that training.” (Parent 2)
“But it’s difficult to sort of detect the trends, which is where it’s nice in some software where it- it actually highlights stuff that it’s noticed.” (Participant 7)
Tolerating and experiencing glitches and inaccuracies
“and I’ve noticed.. as we’ve taken part in a lot of trials, these sensors are getting better.. the finger test and the sensor is becoming close and closer. I remember four, five years ago they were wide apart. And you thought, ‘well what’s the point, you know if it’s going to be so widely different.’ So we start seeing an improvement in the technology and how accurate the sensor’s becoming.” (Parent 5)
Alarms
“It beeps when you’re going high. Having that, just that- that knowledge that you’ve got something looking out for you, just in case you do miss it, is- is so relieving, like ridiculously good… it’s just- just another level of freedom. You just- you know you’re safe… yeah, just added security.” (Participant 9)
“So, for instance a week ago, em [child’s name has] never had a hypo at 11 o’clock at night, never. I heard an alarm going off and thought: what the hell was that? He’d dropped to 2.2. I wasn’t due to test [child’s name] until 12 o’clock and I think it was about 11 o’clock. So I would have left him another hour, before I tested him. By then, he could have died or gone into a coma.” (Parent 7)
“The thing is she can’t really have the alarms at school cause the teacher is not very happy about her beeping. So, and if she does she just stops it so the kids are not looking at her because she’s beeping. So it doesn’t really have any kind of positive effect, the alarms during the day. So she would just switch them off. She doesn’t even check why is it beeping… Just because she don’t want them going off in school cause it‘ll draw attention to her.” (Parent 1)
“I kind of love it and I hate it, cause I hate the fact that it shouted at me all the time. And they’re like [names health professional] ‘that’s what you want, so you can make sure you’re ok’. I’m like: ‘not at 3 o’clock in the morning, I don’t care.’” (Participant 6)
“It goes off a lot, it will vibrate and vibrate, and then this big alarm will go off… And it wakes me up. And it goes off in lessons. And it really frustrates me. And it’s like any diabetic will know if something annoys you about your diabetes, it’s more than being annoyed, it’s deep anger…it’s telling me I am high or it’s telling me I’m low.” (Participant 10)
Data lag
“It alerts when I’m going low or I’m going high. So I do a sugar test: it says 13 the (CGM) reading says I’m 13.5 going up. So it’ll constantly beep… saying you’re 13.6, 13.7, you’re going up, you’re going up. And actually I’m going down. But it hasn’t caught up with it yet.” (Participant 13)
“in a way… the arrows are more useful to you than the actual number because it’s not about what you are right now, is it. It’s about what’s gonna happen while you’re asleep, or while you’re going for your run... or whatever it is, like in a way that’s more helpful to you in terms of what’s happening next.” (Participant 6)