18 months in: a progress update

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.

Training

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.

Piloting DAFNEplus

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.

Patient perspective

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!

Where next?

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.

 

Wish us luck!

Lizzie Coates

DAFNEplus Study Manger

 

Image credits

Nidan (on piaxaby) by CC 2.0

 

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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)