As those who are familiar with DAFNE (Dose Adjustment for Normal Eating) will know, one of its central objectives has always been to improve quality of life. Before we set out on the DAFNE trial back in 1999, we already knew that diabetes affects people’s quality of life in many ways – and that for many, diabetes damages their quality of life.
In the DAFNE trial published in the BMJ, we showed at baseline that, on average, diabetes and its management compromised quality of life. We also showed that attending a 5-day DAFNE course reduced this negative impact 6 months later, and improved overall quality of life. In a follow-up study, we showed that improvements in quality of life were maintained almost 4 years later.
Quality of life cannot be assessed with blood or other medical tests. Quality of life is subjective – it is only truly known by the individual – so it is not even appropriate to ask a health professional to provide a ‘proxy’ assessment of a person’s quality of life.
Another challenge is that quality of life means different things to different people, at different times. There are now many ways to assess the impact of diabetes on quality of life.
We are now preparing for the DAFNEplus trial. And we want to use the best measure to assess the impact of the program on quality of life. This is where we need your help. We think its important for you to tell us which are the best questionnaire(s) from your perspective – which are most relevant, easy to understand, easy to complete, etc.
We have put together a survey: ‘Your Self-Management and You: Quality of Life’, also known as ‘YourSAY:QoL’. In order to have an opinion, you need to complete the questionnaire and then give your feedback on what you like or don’t like about each one. We know the survey is quite long and the questions do seem repetitive but it is important to pitch these questions against each other to understand which ones work best for which purpose.
We very much hope you will get involved, click here to complete the YourSAY:QoL survey and share this blog to get as many people with diabetes involved as possible.
NB. Although DAFNEplus will only be for people with type 1 diabetes, the YourSAY:QoL survey is open to any adult with type 1 or type 2 diabetes.
I am delighted to have been asked to get involved in DAFNEplus, an NIHR funded research programme to explore how people can maintain optimum blood glucose control beyond the first few years post DAFNE. I am one of the lay members of the Programme Steering Committee, whose job it is to oversee the completion of the research.
Here is my story and why jumped at the chance to support DAFNEplus….
Since 27 November 1997 I have lived with type 1 diabetes. Some say it is one of the most complex conditions to self-manage, and as with all long term conditions it significantly affects both physical and mental health.
I had been experiencing all the classic type 1 diabetes symptoms; losing weight rapidly, thirsty, lots of trips to the bathroom, and exhaustion. Luckily for me, I lived in a shared house with my friend who is a nurse and she encouraged me to go to the GP. I can remember the consultation clearly, the GP tested my blood sugar level, jumped up and exclaimed, ‘yes, we have a real diabetic!’
He then sent me off to the hospital where a very kind diabetes specialist nurse took me to a room with a sofa and a box of tissues. I can remember the exact penny dropping moment when I said to her ‘do you mean I am going to have to inject myself with insulin every day for the rest of my life?’ The box of tissues was empty by the time I left the room.
The next thing I did was read as much as I could about the condition, as like most people I didn’t have a clue about type 1 diabetes. Unfortunately, at that time there was not much on the internet, whereas now I can recommend if you want to learn more go straight to Diabetes UK and Type 1 Resources websites.
Life with Type 1 Diabetes
Living with type 1 diabetes is not easy. In a nutshell, my body doesn’t produce the insulin which is needed to change the glucose (sugar) in food into energy so I have to inject that insulin myself. If I didn’t, then a dangerous chemical reaction called Ketosis would occur.
I worked out recently that I have injected myself over 40,000 times and tested my blood sugar level around the same amount of times. Every time I eat I have to work out the amount of carbohydrate in the food and then match the insulin to it.
The big goal is to keep my blood sugar level as close to ‘normal’ levels as possible because this reduces the risks of the many horrible complications which type 1 diabetes can result in. The other big concern is hypo’s, this is when my blood sugar level drops too low. I have warning signs like feeling hungry, irritable and shaky and sometimes I speak and think less coherently. Because of this I must always have access to sugary food or drinks, my children quite like the fact that I always have sweets in my bag! It’s not always straightforward either because so many other factors affect my blood sugar level including exercise, hormones, stress, alcohol and illness.
Anxiety and depression are highly associated with diabetes. Depression is twice as high in people with diabetes than without and 68% of people with diabetes who need psychological support do not receive it. I am part of these statistics. Whilst the NHS has mostly provided me with excellent diabetes specialist care in terms of the medical side of my condition, I have never been offered any emotional or mental health support. Actually, I don’t ever remember a health care professional asking me how I feel in the context of my diabetes care.
Something really important happened to me 7 years into my diabetes life which really helped me to feel more in control. I invested 5 days in taking part in a structured education course, DAFNE (Dose Adjustment For Normal Eating). My motivation for undertaking the DAFNE course was that I wanted to have children and I wanted to do everything in my power to reduce the risks of my diabetes affecting my children.
I am not overegging the impact of this course by saying it transformed my life. It benefited me in so many ways. I felt empowered with new information and skills and more connected (for the first time) with others who live with type 1 diabetes. My confidence and self-efficacy grew and not only did I feel it, but it showed in my HbA1C results.
Pregnancy and childbirth is really complex for a woman with type 1 diabetes but because I had undertaken the DAFNE course I was able to deal with these complexities and the results for me were two healthy children who are my world.
There are now formal healthcare NICE guidelines which recommends proven structured education courses like DAFNE for all people living with Type 1 Diabetes.
The enduring nature of living with type 1 diabetes and also the uncertainty of the future, remain for me, the biggest challenges. In the last few years my control has not been so good. It is not terrible but could be better. In the midst of a busy life juggling work, children and life in general, diabetes has slipped down the list of priorities. I think I have probably suffered with what is commonly termed as ‘diabetes burnout’. I believe mental health, technology and peer support are all pieces of the jigsaw to help with this endurance test.
For me, discovering the diabetes online community has really helped. Peer support is one of the most undervalued resources in health/care. I have learnt so much, felt less isolated and alone, found helpful new resources and been inspired by the courage and determination of people to not only help themselves but spend their time and effort helping others.
Technology has also helped by providing me with information, e.g. I can go out to some restaurants and look online to see what the carbohydrate portions are of the menus. Also the kit is getting better with new approaches to monitoring and self-tracking emerging which I have found really helpful.
Mental health support is still sadly lacking although again online resources are now beginning to be made more widely available and the need to tackle the mental and emotional side of so called physical conditions like type 1 diabetes is being acknowledged.
In the last 20 years, I have led a fulfilling life, type 1 diabetes has rarely got in my way. I’ve travelled round the world, climbed the Inca trail, got married and had children, completed an MBA and got out of doing the housework as it gives me hypo’s (milking it I know)!
I am not sure what the next 20 years will hold for me. I know that if I am able to keep my blood glucose levels close to optimum levels and if I have a healthy physical and mental lifestyle I am doing what I can to reduce my risks of complications. The DAFNEplus research programme is exploring possible options for supporting people like me to achieve that. I sincerely hope that we find the right answers or at least move forward in the right direction.
A heartfelt thank you to Professor Simon Heller and the dedicated health care professionals, researchers, patients and others involved in the DAFNEplus research programme.
Today we celebrate the 1st birthday of the DAFNEplus project! So we thought it would be timely to take stock of our progress and how things have been developing over the past year. We previously wrote a blog at six months into the programme, please take a look here if you wish to read our full story, but more recently we have been busy with the following:
Identifying how and why the DAFNE course needs to change
The team at University College London have been busy completing the Delphi exercise, working with people with type 1 diabetes, DAFNE educators, clinicians and other behavioural scientists to agree how the course will be updated and be converted into DAFNEplus. In addition to this, they have developed a behavioural model for self-management of this condition, and a detailed behavioural analysis to map this to COM-B model. The psychologists and educators have worked closely throughout to agree the new structure of the course and the programme as a whole; updating existing sessions and developing the materials for new sessions.
In parallel to this, our clinical psychologist, Dr Nicole de Zoysa from King’s College Hospital, has been developing plans for the DAFNEplus training to support staff in delivering the new intervention. Again, collaboration has been key and Nicole has worked closely with the DAFNE educators to agree the types of training needed.
Longer term support and technological support
The DAFNEplus team have also been working on the new components of DAFNEplus to develop the model of structured follow-up support after the course, and the technology which is part of the new intervention. We’ve already completed several rounds of user feedback by testing out the technology and follow-up appointments in two NHS centres, and used the feedback from HCPs and patients to further develop and refine these parts of DAFNEplus. Our health economists have also been working hard to develop their plans for the analysis for the pilot study.
The patient perspective
We’ve set up patient advisory groups in Sheffield and London and they’ve made a great contribution so far in feeding in the development of the behavioural models and plans for the content of the DAFNEplus intervention. Our work to establish a wider user group is ongoing and we have been working with the DAFNE Users Advisory Group and local diabetes groups in Sheffield, such as Diabetes UK and the LADDER panel (Lay Advice on Diabetes and Endocrine Research) at Sheffield Teaching Hospitals NHS Foundation Trust. Thanks to everybody who has helped us so far, your input is invaluable to us.
Pilot study preparation
In parallel to this, the team have been setting up the pilot study and taking this through the usual NHS governance procedures – Research Ethics Committee and the Health Research Authority, and the local approval processes at each centre. Staff at the Clinical Trials Research Unit have been getting everything ready from a research point of view for our first pilot course in April this year.
Where do we go from here?
We will train our DAFNEplus educators in March and run our first pilot course in April. Throughout the next year, we will run a number of pilot courses and evaluate the experiences of patients and educators in taking part and delivering DAFNEplus. After all this hard work in the past twelve months, we are really keen to move on to the next stage and see what people think! We will continue to work together closely, using the feedback to refine and update the intervention to get it in a good shape for the bigger trial in 2018.
Building on existing dissemination activity, we are starting to write up the fruits of our labour from year 1 of the grant.
We will also be reaching out the wider DAFNE community to recruit our centres for the trial we plan to run in 2018. If you work in a DAFNE centre and you are interested in taking part in the trial, please contact me directly (firstname.lastname@example.org or 0114 222 0886).
And finally, big thanks to everyone on our big research team and all of the people who have taken part in our studies so far!
The last few posts on here have been about involving the public and patients in our research, and about introducing behavioural science principles to help people with type 1 diabetes to manage their condition better in the longer term. Following on from this, we thought it would be interesting to hear from one of the members of our patient advisory group in Sheffield about their experiences of living with type 1 diabetes and the challenges this poses.
In the post below, Brenda Riley, who has lived with type 1 diabetes for just over ten years and explains how she manages her diabetes every day and her reflections on why she might not always adhere to DAFNE principles.
‘I have Type 1 diabetes, for which I inject Insulin. The medication requirements of this are that, following a DAFNE (Dose Adjustment For Normal Eating) education course, I take a background insulin early morning and late evening, and also a ‘Bolus’ insulin injection whenever I eat. This is called MDI (Multiple Dose Insulin) regime.
Testing my blood-glucose before eating (or drinking). I use a finger-pricking device for this, and test this blood sample on a strip which is input to a ‘blood glucose meter’.
Assessing the amount of carbohydrates in the food or drink which I am having.
Calculating the amount of insulin required for these carbohydrates, plus any ‘correction dosage’ required to reduce my blood glucose from the value shown by the blood glucose monitor (as described above) to the target range. This correction should only be done if it is at least 4 hours since I last injected insulin.
Injecting this insulin, ideally 15 minutes before I start eating.
For people with diabetes taking insulin (both type 1 and type 2), the effects of non-adherence are:
Blood-glucose too low (Hypo – hypoglycemia), this inevitably results in very distressing immediate symptoms (but perhaps not necessarily immediately evident to others in the short term?). The antidote is to eat or drink something very sweet, such as jelly-babies which I always keep with me. If not treated, a hypo can lead to unconsciousness.
Blood sugar too high (Hyper – hyperglycemia), may result in long-term effects of leg and feet ulcers, amputations, blindness, kidney disease, and increased risks of heart attack and stroke. However, prediction of this is statistical rather than individual.
The early morning and late evening testing and injection rarely present an adherence problem (except for very occasional forgetting), although the timing of these injections varies somewhat).
Reasons why I do not adhere strictly to this regime (not in any particular sequence):
There are 2 aspects of this:
Forgetting altogether to test and inject
Forgetting whether I have just injected. This can be resolved by the use of technology in the form of injection pen(s) which record the date, time and dosage of one or more insulin doses. Unfortunately, my excellent insulin pen (Huma-pen Memoir) which displays multiple past details has been withdrawn. I have tried to find out why this was done, and it is apparently ‘for commercial reasons’. I suspect that this may relate to patents, but I have not been able to verify this. (Any feedback on this would be much appreciated!)
Social embarrassment and inferring that others are embarrassed, disgusted, horrified etc. by seeing blood and or testing and injecting generally. I could go to the toilets to do this but the clinicians advise that this is not hygienic. I also worry that I might drop the testing kit and/or pen onto a stone floor and break them. In practice, I often decide to go to the toilet soon, but then forget to do so.
Miscalculating carbohydrate content of food and drink. Often the effects of food and activity are unpredictable. Even ‘low’ exercise/activities such as walking, carrying etc, which is often unplanned, can have a considerable effect.
Sometimes, ‘I cannot be bothered’ especially for small amounts of carbohydrates, such as in one cup of coffee. This also relates to the social embarrassment consideration.
I sometimes do not test or else I inject less insulin, to avoid the possibility of a hypo, with its unpleasant and socially embarrassing effects. The clinicians seem to think that up to 3 hypos per week is acceptable, and better than the risk of longer term high blood glucose. But it is me, not them, who has the hypos!
I am more concerned with short term effects, especially socially, than long term ones. This may relate to many non-adherence situations where the effects of non-adherence do not result in symptoms in the short term.
There is the consideration of informed lifestyle choices. I often target a slightly higher blood-glucose level when I am going out (to avoid a hypo), whereas when I am at home I will aim for a lower target because it is more convenient to test and treat a hypo quickly.
Philosophically, particularly since my husband died, I am even more aware that long term ‘risks’ are to some extent a matter of chance, especially at my age. As (the economist) Keynes said, ‘In the long term, we’re all dead’.
Possibly, I am working to different targets and have different aims from the clinicians’ aims and targets for me. (It’s me who has the hypos!). This affects the amount of insulin which I inject, but not the adherence to the remembering and timing of testing and injecting (which is probably more relevant in its effects, and which, I must admit, is my non-adherence problem).
Even when I adhere strictly to the insulin regime, sometimes my blood-glucose result is unpredictable (but sometimes it is near to expectation and target). This makes me loose confidence in the ‘rules’. Conversely, I sometimes do not ‘adhere’ but yet get good blood-glucose results at my next test.
I also have high blood-pressure. I do not have problems with adhering to taking these tablets. I account for this by 2 factors:
– I always take these tablets when I go to bed (habit). I leave them on my pillow so that I do not forget them. This ‘habit’ consideration also relates to my morning and evening ‘background’ insulin.
– One of the tablets is in a ‘calendar’ strip packing, so I can check whether or not I have just taken it.
I do appreciate any help that technology can give me, as well as the help from the diabetes professionals. I suspect that what the professionals want from the technology is not necessarily what I, as a user, want from it, which is immediate, time-stamped, combined feedback of recent measures. My ideal for development of new technology would be to help me to automatically record and feedback (to me) the time-stamped last few insulin doses actually taken together with my blood glucose readings. This would help me to confidently determine whether it is safe to give myself a Bolus correction and also to account for any individual high blood glucose readings, to help me to learn from them. However, I cannot suggest how such technology could be provided.
I currently use a combination of technologies to help me to manage my diabetes : my Accu-chek blood glucose monitor, my LIBRE monitor, my Huma-pen memoir (and Novopen 5), online analysis of my uploaded data, and old-fashioned paper and pencil.’