Swim 22 Challenge – Complete

Back in March I wrote a blog post about starting the Swim 22 challenge raising money for Diabetes UK. That seems like such a long time ago!

Now I’ve swam the distance of the channel in just 12 weeks! The support has been incredible and the JustGiving page has raised £327 for Diabetes UK, I can’t thank everyone enough for donating.  And that support kept me going when I felt like I was struggling with the sheer distance some weeks.

It hasn’t been easy – I’ve had shoulder problems from the distance, which has meant my own hobby of weight lifting has taken a back seat!  But I feel a great sense of achievement and pride having realised how far 22 miles really is. 

I would have never thought about doing something like this before, and would completely encourage people to go out of their comfort zone for good causes.

Our JustGiving page is still open for anybody who wants to top up the sponsorship, all donations greatly appreciated.

Here’s to maybe completing this or some other challenge next year!

Becky Brown

Trials Support Officer – DAFNEplus

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Who’s Who – Pat Phillips

This is the first ‘Who’s Who’ blog post, the aim of which is to give readers of the DAFNEplus blog an insight into the team behind the trial. Each month we will aim to post up a different perspective from one of the team members!  First up is Pat Phillips…..

I’m Pat Phillips, the new study manager on the DAFNEplus study, I’m a nurse by background but I’ve combined nursing with research over the past few years. I started in this role at the beginning of March 2018 and I’m slowly finding my feet (and learning lots) with the assistance of the DAFNEplus team. Included in a list of things that I knew nothing about a few weeks ago, but now know a little bit about, are: managing budgets, CE marking of products to ensure that they meet the required standard for sale in the European Union and negotiating excess treatment costs with NHS sites! There’s more to managing a study than meets the eye!

It does feel like a lot has happened in a short time. We are in the process of finalising the intervention, a complex process involving health professionals, academics and patients which builds on earlier work conducted as part of the study.

Additionally, we have prepared and submitted an application to the ethics committee, this is an important part of the set-up of a new study and alongside approval from the Health Research Authority will ensure that the study is planned and conducted in a safe way with maximum benefits to the public and patients. We can’t go ahead with the study without these approvals.

We are also in negotiations with fourteen NHS trusts around the UK that will host the study and we are making preparations to ensure that they are ready to start recruiting in September. Over the course of the Summer we will develop and deliver training on the research process and the new intervention to health professionals and research staff – so it looks like I’ll be busy over the Summer.

Swim 22 challenge

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.

 

Becky Brown

DAFNEplus Trials Support Officer

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

 

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)

 

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