DAFNEplus: have ‘your say’ on quality of life

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.

by

Professor Jane Speight; Dr Elizabeth Holmes-Truscott, The Australian Centre for Behavioural Research in Diabetes (Diabetes Victoria and Deakin University)

 

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DAFNEplus hits the road

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 e.coates@sheffield.ac.uk

 

Lizzie Coates, DAFNEplus Trial Manager

 

Image credits

John Cooke by CC 2.0

Happy birthday DAFNEplus!

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 (e.coates@sheffield.ac.uk 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!

 

Lizzie Coates, DAFNEplus Programme Manager

 

Image credits

April by CC 2.0

DAFNEplus presented at recent behavioural medicine conference

Earlier this month, the DAFNEplus study delivered its first output. The first piece of work that was undertaken, the expert consensus process on revising the DAFNE curriculum, was presented at the UK Society for Behavioural Medicine (UKSBM) annual conference in Cardiff. A mix of healthcare practitioners, epidemiologists, health and clinical psychologists, medical sociologists and health economists attended the conference.

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Dr Kathryn Hamilton from University College London, presents at UKSBM 2016

The focus of the talk was on our adaptation of a consensus methodology, called the Nominal Group Technique, to achieve agreement between behavioural scientists, DAFNE clinicians and DAFNE educators and patient representatives. We also reported on an outcome of this consensus process; a number of principles and behaviour change techniques that it was agreed will be used in revising the DAFNE programme so that it better supports people in keeping up the skills that are encouraged during the DAFNE programme over the long term.

The focus of the talk was on our adaptation of a consensus methodology, called the Nominal Group Technique, to achieve agreement between behavioural scientists, DAFNE clinicians and DAFNE educators and patient representatives. We also reported on an outcome of this consensus process; a number of principles and behaviour change techniques that it was agreed will be used in revising the DAFNE programme so that it better supports people in keeping up the skills that are encouraged during the DAFNE programme over the long term.

The focus of the talk was on our adaptation of a consensus methodology, called the Nominal Group Technique, to achieve agreement between behavioural scientists, DAFNE clinicians and DAFNE educators and patient representatives. We also reported on an outcome of this consensus process; a number of principles and behaviour change techniques that it was agreed will be used in revising the DAFNE programme so that it better supports people in keeping up the skills that are encouraged during the DAFNE programme over the long term.

Achieving consensus on programme revisions is an important part of working effectively in a multi-disciplinary team developing complex behaviour change interventions, such as DAFNEplus. It is crucial to make sure that all team members and stakeholders are heard, and that their views are accurately represented to ensure that the revised programme meets everyone’s needs. This is a common issue that many research groups working in healthcare face.

Also, because intervention development is a burgeoning area, it’s important that dissemination of research should not be limited to the findings, and to recognise the value of methodological insights. We therefore wanted to share our findings and learning points that could be applied to other behaviour change intervention development contexts, for example weight management and exercise in older adults.

The talk was well received, and networking resulted in some important shared learning. For example, a research group that had recently undertaken a systematic review of principles and techniques for supporting sustained behaviour change in relation to weight loss were happy to share their findings with the DAFNEplus team and this will now feed into the programme redevelopment.

Dr Kathryn Hamilton (née Dennick), University College London

 

Image credits

Michel Curi by CC 2.0