Hello, my name is Becky and I’m the Trials Support Officer based at the University of Sheffield working on the DAFNEplus Project.
I’ve been working on the trial for 6 months now, and when I first started another Trials Support Officer, Jess, asked if in February I’d join in the Swim 22 challenge for Diabetes UK as a team. Thinking it’d be fun and for a good cause I said yes, and now here we are.
It started on the 22nd February and we have 12 weeks to swim 22 miles, the equivalent of the English Channel, and all the sponsor money goes to Diabetes UK. We’ve named the team Bend it like Biondi (after the swimmer) and we have currently swam 11.47 miles between us (32.53 miles to go!).
Since working on DAFNEplus I’ve learnt a lot about the lives of those with Type 1 diabetes and know that doing this swim will hopefully raise money to make living with the condition a lot easier. The challenge is proving to be quite tough already, I’m not sure I quite understood how far 22 miles really was!
If you’d like to sponsor our team, and see our progress we have a Justgiving page set up here
Thank you to all those that have sponsored so far, and I’ll be back to reflect on how the whole challenge went when it’s completed in May.
As we’ve just passed the 18 month mark on DAFNEplus, we thought it would be good to once again take stock of our progress. You can have a look at our previous progress update from 12 months here, but here’s a summary of what we’ve been up to since March.
During March and May, we trained all of our DAFNEplus facilitators in delivering the new intervention. The training was enthusiastically received, but we are keen to see how this translates into the delivery of DAFNEplus and learn from this for the trial, and so as part of the pilot study (see below), we’ve asked all staff to provide feedback on training. Ongoing support and supervision for DAFNEplus facilitators is being provided by our clinical psychologists, Nicole de Zoysa and Paul Chadwick.
We’ve run three DAFNEplus courses so far, one in each of our pilot centres in Sheffield, Norwich and King’s College Hospital. To help us to understand how we can keep improving DAFNEplus before the trial, we’ve been collecting lots of feedback by observing the courses, and interviewing staff and patients to find out about their experiences. We will use this feedback to help update DAFNEplus before piloting this again in January and February next year.
We are continuing our work with patient advisory groups in Sheffield and London who give excellent and appropriately challenging feedback on our ideas for DAFNEplus.
Your SAY study
We’ve also been working closely with Jane Speight and Liz Holmes-Truscott in Australia on an online survey to identify the optimal diabetes specific quality of life outcome measure. This is still open here to all adults 18-75 years in the UK and Australia with both type 1 and type 2 diabetes.
Recruitment to the trial
In parallel to the pilot study, we’ve also begun to visit all of the potential DAFNE centres for the trial. There’s been lots of interest and welcoming experiences so far. Thanks to everyone for accommodating us!
Over the next six months, we will largely be busy with the following:
Updating DAFNEplus before piloting again in all three centres in early 2018 – no mean feat!;
Setting up the trial – finalising the study protocol and applying for excess treatment costs funding to deliver the study in local centres; and
Keeping going with dissemination activity – writing up research papers and presentations.
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.
We are now recruiting DAFNE centres for our cluster randomized controlled trial starting in Autumn 2018.
Now we are up and running with the pilot study, Simon Heller and I have turned our attention to recruiting DAFNE centres for the DAFNEplus cluster randomized controlled trial (RCT). The study will open for recruitment in 14 DAFNE centres starting in September 2018.
As part of the trial, sites will be asked to deliver their usual number of DAFNE courses per year and the standard DAFNE referral criteria will apply. As a cluster RCT, half the sites will do standard DAFNE and half will do DAFNEplus.
To be eligible for the trial, DAFNE centres must have a minimum of three educators trained in the 5 x 1 model, because it is this version of DAFNE on which DAFNEplus is based. As an NIHR funded research programme, there is funding available for all participating centres to support the local completion of the trial.
Yesterday we completed our first visit to a prospective DAFNEplus trial site at the Diabetes Centre at Bedford Hospital. We were enthusiastically welcomed to a lunchtime meeting by the small team of local DAFNE educators and clinicians who had lots of thought provoking questions for us about DAFNEplus and what taking part in the trial would mean for the team. Thank you for having us!
More generally than this, we have been delighted by the interest from across DAFNE centres in the UK. So, between now and Christmas, we will visit almost twenty other DAFNE centres to meet staff, present the study and discuss how participation could work locally.
If your DAFNE team is interested in joining us on the trial, please do get in touch with me for more information – 0114 222 0886 or email email@example.com
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!