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