The UK Diet and Diabetes Questionnaire - a research tool story

Dr Clare England, Health Services Researcher at Health Technology Wales, gives us an update on how the UK Diet and Diabetes Questionnaire she developed as part of her PhD work has been used since it was created and validated in 2016.

Could we start with some background about the questionnaire, what inspired you to develop it?

The questionnaire came about through my PhD work on the NIHR Fellowship Programme. Prior to that, I was working on a research study with people with type 2 diabetes. It turned out that many of the people we were working with had a lot of questions about their diet. They wanted to know what they should be eating or what would happen if they ate certain things.

When people came to us with these questions, we avoided being too directive in our suggestions. We used motivational interviewing and asked them to identify dietary changes they could make themselves.

Interestingly a lot of them would go on to make suggestions we knew wouldn’t make much difference when looking at their diet overall. This made us realise that, at the time, many people with type 2 diabetes didn’t have access to specialist services. Many never got asked what they were eating, or they would be asked if they were eating enough fruit and veg and that would be it. Suggested improvements to a person’s diet would be too impersonal, which is the opposite of what you need dietary advice to be.

We decided that developing a brief, targeted dietary screening tool people could fill in and score themselves could be helpful. We hoped that making it accessible would let people look at their score and say: ‘OK, well, these are areas that I that I could work on, and these are the areas I’m fine with’.

This would avoid inappropriate dietary changes. For example, people who ate five portions of fruit and vegetables a day wouldn’t be saying they needed to eat more veg when perhaps there were other things they should be eating less of.

We worked with dietitians, nurses, GPs and people with type 2 diabetes to develop a brief questionnaire for assessing the dietary habits they saw as particularly important to people affected by the condition. After that we trialled and tested the questionnaire for reliability. We wanted to know whether people answered it the same way twice and whether, and how, it would compare with food diaries.

Once the questionnaire was developed, you worked with researchers at the University of Birmingham to adapt it to the needs of South-Asian populations.

Yes, that work has meant that the questionnaire ended up having a relatively wide appeal, for example, in the Middle East. I think this might be due to there not being a lot out there that’s tailored in the way our questionnaire ended up being. I can tell you it’s been used in India, Bangladesh, Iran and Saudi Arabia, as well as the United States, Canada and Australia.

It must be quite gratifying that a piece of work you did during your PhD is now making its way around the world because of the inclusive way in which it was designed.

It’s lovely. People seem to like it. It’s even been translated into standard Chinese by an MSc student I supervised.

Do you know how many times the questionnaire has been downloaded since it was made available?

As far as I know, it was downloaded over two thousand times at the end of 2020. I think it’s been downloaded another 400 times between September 2020 and early 2021, so the uptake was quite steady.

In terms of how the questionnaire is being used, is it what you expected or were there any surprises?

To be honest, it hasn’t really been used in the way we hoped. Not entirely, anyway.

What do you mean by that?

We have had some success with it. For example, it’s currently being used in a commercially sponsored continuous glucose monitoring device study in people with type 2 diabetes.

In that sense it has been a success as it has been taken up as a research tool, both commercially and non-commercially. For example, there was a project in Birmingham that used it to provide dietary advice and the Leicester Kidney Lifestyle Team used it as an assessment tool in a feasibility study for a self-management intervention.

What it hasn’t done, as far as I know, is been adopted more widely in clinical practice, which is something I was hoping for.

I did personally train some nurses in North Somerset to use it and it’s entirely possible that people are picking it up and quietly using it. However, there’s no way for me to check as I don’t ask why someone is downloading it and that sort of work wouldn’t involve results being published in a scientific journal either.

What do you think stood in the way of wider adoption?

I think a lot of it was associated with structural difficulties. Who should be responsible for sending it out? How would patients return it? If a general practice sent it out to all their patients that may not be relevant or appropriate. Someone with type 1 diabetes for example might be irritated by the fact they were being sent something they felt they shouldn’t be receiving in the first place.

Perhaps if we had had access to more funding or a bigger team, we may have been able to push for wider adoption in practice but the fact that it’s still being downloaded now does make me hope people are still finding it useful.