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Exercising with an automated insulin delivery system: qualitative insight into the hopes and expectations of people with type 1 diabetes
Abstract
For people with type 1 diabetes (T1DM), regular exercise can be highly beneficial. Although exercise has been shown to improve quality of life and health for people living with T1DM, there are common barriers. To examine such issues, we explored the perceived impact that automated insulin delivery systems could have on people with T1DM and their families. One common theme found was hopes, expectations and impact on sports and exercise. Four sites (United States: three; UK: one) were involved in this study. Two hundred and eighty-four participants were recruited across all sites; participants comprised: children (9–11 years); adolescents (12–18 years); parents/caretakers of children and adolescents with T1DM; adults with T1DM (18–77 years); and their significant others/partners. Between May and December 2015, focus groups and semi-structured interviews were conducted and analysed using content analysis. Three themes found related to the benefits of automated insulin delivery systems: (a) more freedom and spontaneity in the individual's ability to exercise; (b) relief from worry of hypoglycaemia as a result of exercise; (c) removing the ‘guesswork’ of adjusting insulin for exercise. Two further themes emerged relating to potential concerns with regard to safely exercising while wearing an automated insulin delivery system. Further research is encouraged with a view to providing accurate algorithms and increasing confidence for those using automated insulin delivery systems and, in turn, for their exercise colleagues and loved ones.
Introduction
Regular exercise for people with type 1 diabetes (T1DM) has been shown to benefit insulin sensitivity, reduce cardiovascular risk factors, improve quality of life, and reduce mortality for people with T1DM.1 However, there are also common barriers to exercise for people with T1DM. The main barriers linked to T1DM and exercise are fear of hypoglycaemia and lack of knowledge about managing diabetes and its complications around exercise.1, 2 Using an insulin pump provides flexibility in controlling the timing and amount of insulin delivered, addressing some of the barriers to exercise.3 The addition of a continuous glucose monitor (CGM) offers greater control over blood glucose levels and may help make exercise more feasible.4 Training is required to ensure effective use of these technologies, addressing bolus doses pre- and post-exercise3 and managing post-exercise hyperglycaemia.3
Automated insulin delivery systems include an insulin pump and CGM device along with an algorithm embedded in either the insulin pump or a separate, hand-held device that coordinates insulin delivery by the pump based upon the CGM results. In safety and efficacy trials, automated insulin delivery systems have shown to decrease hypoglycaemia.5, 6 However, no known research outside clinical trials exists which focuses on the expectations of such systems. To address this gap, we explored the perceived impact that automated insulin delivery systems would have on the person with T1DM and their families. One common theme found was hopes, expectations and impact on sports and exercise.
Participants and methods
Four sites (Stanford University School of Medicine, California; Bournemouth University, UK; the Joslin Diabetes Center, Boston; and the Lurie Children's Hospital, Chicago) were involved in this study.
Ethical approval was granted from each institution's Institutional Research Board prior to recruitment.
In all, 284 participants were recruited across all sites through flyers posted in clinics and hospitals, social media, as well as current infrastructures (e.g. support groups).7,8 (See Table 1.) Participants with and without knowledge and/or experience of automated insulin delivery systems were recruited and no specific manufacturer details of current or previous pumps and/or CGM were provided. Participants included: children aged 9–11 years and adolescents aged 12–18 years with T1DM; parents/caretakers of children and adolescents with T1DM; and adults with T1DM and their significant others/partners.
| Characteristics | No., mean, %, (range) |
|---|---|
| No. of focus groups | 48 |
| No. of semi-structured interviews | 89 |
|
Adults with type 1 diabetes (T1DM) Semi-structured interview participants Age, years Female Race/ethnicity: – Black/African American – Hispanic/Latino – Asian/Pacific Islander American – White, Non-Hispanic – Other Bachelor's degree or higher education Current pump use Current CGM use Haemoglobin A1c |
113 31.0% 39.5 (18–77) 70.8%
1.8% 0.9% 3.5% 92.0% 0.9% 73.5% 72.6% 54.5% 7.5% (5.0–11.8%) |
|
Adolescents/young adults with T1DM Semi-structured interview participants Age, years |
35 45.7% 14.7 (12–20.8) |
|
Children with T1DM Semi-structured interview participants Age, years |
16 43.8% 10.3 (9–11) |
| Parents of children/adolescents with T1DM | 65 |
| Semi-structured interview participants | 25.1% |
| Relationship to child: | |
| – Mother | 79.7% |
| – Father | 17.2% |
| – Other | 1.5% |
|
Responding for female child Child's race/ethnicity: – Black/African American – Hispanic/Latino – Asian/Pacific Islander American – White, Non-Hispanic – Other racial group Child's current pump use Child's current CGM use Child's haemoglobin A1c |
61.7%
1.5% 5.3% 0.0% 89.9% 3.3% 71.8% 53.8% 8.1% (6.4–13.0%) |
| Partners of people with T1DM | 55 |
| Semi-structured interview participants | 20.0% |
| T1DM partner's race/ethnicity: | |
| – Black/African American | 0.0% |
| – Hispanic/Latino | 1.8% |
| – Asian/Pacific Islander American | 1.9% |
| – White, Non-Hispanic | 94.5% |
|
– Other racial group T1DM partner's current pump use |
1.9% 83.6% |
| T1DM partner's current CGM use | 74.1% |
| T1DM partner's haemoglobin A1c | 6.9% (5.0–9.2%) |
| Total no. of participants | 284 |
Focus groups and semi-structured interviews were conducted between May and December 2015. Subsets of participants using pumps, CGM, and automated insulin delivery systems were included, but separated according to the method of treatment. For example, those who had already experienced participating in a clinical trial of an automated insulin delivery system would be interviewed separately from those who had yet to have any experience with an automated insulin delivery system. Each site used a team of experienced and qualified focus group/interview facilitators who worked from the same structured topic guide and explored in-depth key issues around: expectations of the automated insulin delivery system; hopes; anxieties; reasons for uptake; perceived benefits/barriers; impact on daily function; possible reasons for discontinuation; and potential barriers to optimal engagement. An explanation of the automated insulin delivery system was not provided, thus enabling participants to discuss what they knew of the technology and their hopes and expectations of this new technology.
Following transcription of the audio files, the data were analysed using thematic analysis.8 The full method (e.g. full inclusion criteria, sample questions, analysis) of this study has been published.7, 8
Results
Three over-riding themes commonly discussed related to the benefits of automated insulin delivery systems; these included: (a) more freedom and spontaneity in the individual's ability to exercise; (b) relief from worry about hypoglycaemia as a result of exercise; and (c) removing the ‘guesswork’ of adjusting insulin for exercise. There were also two further themes that emerged related to potential concerns with regard to safely exercising while wearing an automated insulin delivery system.
First, we will present findings regarding the potential benefits, followed by participant concerns.
Freedom to exercise
With regard to exercise, one of the most commonly discussed beliefs about an automated insulin delivery system was the possible freedom it would provide. One aspect of this freedom was being able to partake in exercise without constantly checking blood glucose levels.
‘It'd be nice on long runs, not to have to worry about getting low blood sugar. That would be nice. As it is, I always carry sugar with me, but sometimes, when I'm on a long run, I just don't feel like eating sugar.’ (Adult, Focus group.)
‘It would be useful during exercise. Because if it was still making my blood sugar have better control, it would stop me from getting low during exercise and then spiking afterwards. I think it would be very useful if you do a lot of sport.’ (Adolescent, Focus group.)
Experiencing hypoglycaemia during intense or vigorous exercise is a common barrier to exercise. The ability to be able to consistently train without a worry of experiencing hypoglycaemia was a perceived benefit.
‘If we're just talking about something that's, say, similar to an insulin pump on a CGM, from a personal perspective, I would be absolutely fine with that if it means that I can run without becoming hypoglycaemic after only a few miles, and it means that I could smash it through and run any distance that I want to run.’ (Adult, Focus group.)
Partners of the adult participants with T1DM also shared the belief that the freedom to exercise when they wanted, and as hard as they wanted, would be a great benefit to their quality of life.
‘Just being able to say we're going to take a walk and we go take a walk. That would be great.’ (Partner, Focus group.)
Similarly, children had a notion that an automated insulin delivery system would allow them to improve sports performance.
‘It's keeping your numbers up during the match, so you don't have to like at half-time, test and that. You can keep on routines and focus more on the actual game.’ (Child, Interview.)
Relief from worry
The belief that automated insulin delivery systems would provide some relief from constant worry about the possibilities of going hypoglycaemic and/or hyperglycaemic before, during, and after exercise was discussed.
‘Yeah,… I coach a junior football team so it would be nice not to have to panic while I am doing that and I am going to run low and have to run back and grab some more sweets.’ (Adult, Focus group.)
‘The hardest time would probably be when I am doing exercise, because sometimes when I am doing exercise, I'm quite prone to go very low. And so, that would tell me if I am going up or going down, and I could just look and think I'm going to do this or do that and it would just really help.’ (Child, Focus group.)
‘Because, personally, sometimes when I do exercise, I go down, and sometimes I go up… And I don't know how to prepare for it because if I eat food beforehand, and then I end up going up, I'll go really high. Or if … I do exercise, I'll go really low. It would definitely help with that.’ (Adolescent, Interview.)
Parents and children also highlighted the potential benefit of an automated insulin delivery system, especially during and after exercise for glycaemic control.
‘It's also the “after exercise” effect that you can never be quite sure what's going to happen and how long it is going to last for. It [would] be useful for that if you could go and do the exercise and not have to have all the extra thinking afterwards.’ (Parent, Focus group.)
‘Since you're exercising, your blood sugar goes low. It could probably manage it and give you glucose at the same time.’ (Child, Focus group.)
‘We go to every game and everybody else is dropping their kids off and we're sitting there just making sure that this – some of the coaches are volunteers so the last thing you want to do is inconvenience them by: “Okay, so if this ever happens, like this red box right here; if she has this out, she could be low.” And then to her recreational – the recreational district it is like, I don't know if I feel comfortable trusting – you know the coaches are great, but it is, like, I don't know if they feel comfortable.’ (Parent, Focus group.)
The decrease in the constant worry concerning blood glucose levels was reported to aid frustration that currently can be a deterrent from exercise.
‘It can be really frustrating to have to eat immediately and so I think if it helped you in exercise that would be good and, actually, I think it would potentially encourage more people to exercise as well if it took away that risk of hypos and highs.’ (Adult, Focus group.)
Partners also discussed the positive impact that this decrease in worry would have on their partner's enjoyment of exercise.
‘I do like the fact that while she's exercising […], the machine would be monitoring and telling her before she got to that point, “Wait a minute, you just need to back off a minute,” take a few seconds or a few minutes, and maybe have something to eat if it's going down too quickly. So I think that would help her; she'd be able to do the exercise and feel a lot more confident that at the end of it her blood sugar is still going to be okay.’ (Partner, Focus group.)
Relief from guesswork
Another potential benefit was the hope that automated insulin delivery systems would be able to accurately measure blood glucose levels while exercising and adjust accordingly, decreasing the need to ‘guess’ the correct dose of insulin.
‘It does seem like it would take the human error aspect out of it… So it could potentially – what I see as a benefit of this being for me is when I go out and ride for 3 or 4 hours then I come home, I don't have to mess around with these calculations. Potentially this could help and say, okay, well I don't need as much insulin or my blood sugar is going down and then it would react accordingly.’ (Adult, Focus group.)
‘Again, I can imagine that anything that reduces sort of the guesswork of needing to know where her blood sugar is going to go, and eat appropriately or take the appropriate amount of insulin. She'd have to eat so much sugar to compensate for her blood sugar dropping during a workout that it wasn't worth it. And if the artificial pancreas [automated insulin delivery system] could help avoid some of that guesswork, I think it'd be great.’ (Partner, Focus group.)
Potential barriers
Doubts about accuracy. Although many participants anticipated a benefit of the system would be to automatically adjust dosing based on exercise, confusion remained about what the system could offer in these terms.
‘Sometimes during sports I wouldn't trust it… Or if I had a low I probably wouldn't trust it. For sports, sometimes I'll get huge spikes, and it's from adrenaline not from something else, so I'm afraid it might correct for that, and then just drop me down in the middle of my hockey game or something and I'd get really sick.’ (Adult, Focus group.)
For those who already had experienced using an automated insulin delivery system in clinical trials, this was shown as one of the results of having used the system.
‘I deliberately didn't do any major walking or cycling on the weekends while I was on the system because I just didn't want to risk having a bad hypo in the night.’ (Adult, Focus group.)
These concerns were also shown as a worry regarding how an automated insulin delivery system would adjust if they decided not to exercise.
‘No, I think it would actually be more restrictive in some ways. Because right now, I would have to know, before I would have lunch, for instance, and then I decide “Oh, I want to walk after lunch.” Well, I can do something to finagle that, but if I said to it “About to exercise, and I'm going to have lunch.” And then I decide not to exercise, then what?’ (Adult, Focus group.)
In addition, it was feared that the terms of ‘moderate’ vs ‘light’ or ‘vigorous’ exercise inserted into the system could potentially cause a problem.
‘What is moderate exercise and what is light exercise?’ (Respondent 4: Adult, Focus group.)
‘And how would you know what you are going to do? Like you could give yourself insulin for moderate exercise and it turns out you do light exercise.’ (Respondent 5: Adult, Focus group.)
‘Well, and I know that [Name] just said, how are we going to define exercise too because sometimes you will walk seven miles in a day and you don't necessarily think of it as being exercise; you are just at work and you're busy, so how are we going to quantify that? Does that only mean we're going to the gym or does that mean being on your feet at work? I think it is kind of a slippery slope as it is with craving food. I don't know – or just cleaning your house. You don't always know when you're “exercising”.’ (Adult, Focus group.)
Physical appearance and comfort. In discussions regarding specific situations where participants might want to disconnect an automated insulin delivery system, some participants – mainly teens and children – argued that they would disconnect it to prevent someone seeing them wearing it during exercise or sporting events.
‘I probably wouldn't want to wear it when I exercise and do sports, but I don't really have a choice in that. That's the main time of movement where I wouldn't want to wear it.’ (Child, Focus group.)
Most participants stated that physical appearance was not a big issue for them. However, some argued that they would not wear an automated insulin delivery system if the nature of the exercise or sporting activity prohibited comfortable usage – for example:
‘When I'm doing sports, it would be cool if I'd be able to remove it. Like with my insulin pump, I could unclip it.’ (Adolescent, Focus group.)
Discussion
One of the most prominent themes for the participants was the desire to feel they have the freedom to exercise. The common concern regarding the negative impact and constant worry while exercising was consistent with previous research.9, 10 However, these results present participants’ hope of lessening this negative impact on their exercise routine through using an automated insulin delivery system. As inaccuracies of current treatment for exercise have been a strong deterrent from exercising for those with T1DM,1, 2, 9 these findings demonstrate that, as systems become more accurate, people with T1DM may exercise more regularly. The sense of freedom was also reported in being able to exercise without restrictions – for example not pausing to eat or drink to prevent hypoglycaemia.
This research shows that, through the use of automated insulin delivery systems, more people with T1DM may be more confident to exercise and, as a result, feel the benefits of a regular exercise routine.
The perceived impact of what using an automated insulin delivery system would be like was commonly reported as decreased worry with regard to exercising safely. Automated insulin delivery systems have shown to provide a more accurate level of blood glucose regulation and decrease instances of hypoglycaemia.11, 12 The participants expressed that with a constant regulation and ability to automatically adjust blood glucose according to exercise level, automated insulin delivery systems may decrease worry and fear.
The discussions of the potential benefits and drawbacks of using automated insulin delivery systems for exercise have shown it was perceived to be beneficial not only to the consistency of exercise, but also in reducing worry regarding hypo- and hyperglycaemic incidents, if automated insulin delivery systems worked accurately. However, these positives relied on the ability for the person using an automated insulin delivery system to trust the device, and, as potential uncertainties were evident, this trust might not be arrived at easily. Limitations of this study were the differences in demographic data collected – these limited the ability to compare across groups based on demographic and behavioural aspects.7, 8
Findings from this study have provided novel, first-hand insights into the potential benefits and barriers to automated insulin delivery systems during exercise. Further research is encouraged with a view to providing accurate algorithms and increase confidence for those using automated insulin delivery systems and, in turn, for their exercise colleagues and loved ones.
Conclusion
First-hand insights were shown of the potential benefits and drawbacks of using automated insulin delivery systems for exercise. Although the insights have been mostly positive and ones of hope, worries still remain. Trust in the system must play a fundamental role in onboarding and training associated with automated insulin delivery systems. Automated insulin delivery systems can potentially lead to an increase in exercise levels for people with diabetes and, subsequently, improved health status if managed effectively.
Acknowledgements
We would like to thank our participants for their time and generosity in sharing their thoughts and experiences with us. Thank you also to Leona and Harry Helmsley Charitable Trust for their funding of this project.
Declaration of interests
KEY POINTS
- The perceived impact of using automated insulin delivery systems for people with type 1 diabetes and their families was explored in four sites (United States, United Kingdom)
- Hopes, expectations and impact on sports and exercise were a key theme
- Automated insulin delivery systems could improve confidence to exercise for people with type 1 diabetes and for their families
