How we’re pushing forward research into diabetes and mental wellbeing – by Faye Riley

A couple of weeks ago, I had the opportunity to attend a workshop all about diabetes and mental wellbeing.

Diabetes doesn’t just affect someone physically. The relentless need to manage your condition, and dealing with everything diabetes throws at you, affects mental health as well.

People with diabetes experience much higher rates of mental health conditions such as depression, anxiety and eating disorders, compared to people without diabetes. And recent studies have shown that people with diabetes report that their condition has a negative impact on all aspects of their life.

So we know there’s an issue. On top of this, our Clinical Studies Groups – which bring together researchers, healthcare professionals and people living with diabetes – identified that there’s a big knowledge and research gap in this area. There’s still so much we don’t know about how diabetes impacts on mental wellbeing, how to spot people with diabetes who have a mental health condition or how to best support them.

And this lack of research is a massive obstacle in the way of improving psychological care and emotional support. How can we tackle what we don’t yet fully understand?

Bringing together the people who can make it happen 

Having identified the urgent need for more research in mental wellbeing, we needed to unpick this further. Where are the biggest research gaps and opportunities in this field? And what specific research questions should the research community focus on to make the greatest possible difference for people with diabetes?

To get the answers, we turned to the experts. We brought together people living with diabetes, researchers and healthcare professionals, working in different pockets of mental health and diabetes, for a hands-on workshop. For two days they were tasked with using their insights to collectively figure out how we can move research in this area forward. It was a huge challenge, but we had the best of the best in the room.

To set the scene, we first heard from world renowned researchers on three key mental health conditions that affect people with diabetes: diabetes distress, depression and eating disorders.

Professor Larry Fisher and Dr Bill Polonsky ran through what we know about diabetes distress. They highlighted it’s natural and par for course to experience distress when you have diabetes. After all, it’s a full time job that you never asked for, don’t get paid for and get no holiday from.

But it’s vital that higher levels of distress, which impact on the way people manage their diabetes, are picked up by healthcare professionals and that we figure out how to give people the right kind of support to help them cope.

Next up, we heard from Professor Richard Holt and Dr Mary de Groot on depression. We know people with diabetes are twice as likely to develop depression than people who don’t have diabetes, but we don’t fully understand why. Is it simply down to the effects of living with diabetes? Or are there biological causes, like our genes for example? Unravelling the drivers behind depression will be crucial to prevent or reduce it.

Finally, Dr Marietta Stalder and Professor Khalida Ismail covered eating disorders. Having diabetes doubles your risk of having an eating disorder. It’s thought that this is linked to the fact that you’re forced to become very aware of what you eat, and to perhaps focus more on your weight.

The key eating disorder in people with Type 1 is known as diabulimia, which involves skipping your insulin in order to lose weight. Diabulimia is incredibly dangerous, but it’s not a recognised mental health condition in its own right. And because it isn’t widely understood, some healthcare professionals may not spot the signs.

In people with Type 2 diabetes, we heard that the most commonly diagnosed eating disorders are binge eating disorder and night eating syndrome. But it’s likely that the different eating disorders are found in people with all types of diabetes, rather than being specific to Type 1 or Type 2.

Professor Ismail described how we can count the number of interventions for eating disorders on one hand. And there’s very little evidence to show if they actually work.

The emerging themes

Hearing about the current state of play helped everyone in the room to establish what we currently know and spot where the gaps are. We chewed things over in groups, with the range of different backgrounds and viewpoints helping to spark those lightbulb moments.

Every idea, gap, opportunity or challenge was captured on a trusty post-it note. And by the end of the day we had a wall filled with them. It was a fantastic, rich output. But where to begin?

Enter our research team. They considered each one-by-one and clustered them into 10 themes. And here they are:

  1. Understanding the causes of depression in people with diabetes
  2. Tailoring support and treatments to the individual
  3. Unravelling the impact of stigma and language
  4. Supporting families, parents and partners of people with diabetes
  5. Working out how to recognise and treat diabetes distress, and understand its impact on self-management.
  6. Improving care by learning from what already works or doesn’t work
  7. Deciding at what point in life should we be looking for and treating mental health conditions
  8. Boosting our knowledge of eating disorders in diabetes
  9. Understanding the impact of treatments we currently have (like technology or weight management) on mental wellbeing
  10. Thinking about measuring quality of life and wellbeing as standard in all research studies.

Day 2 of the workshop was all about getting to the nitty gritty and generating specific questions for scientists to answer within each of these 10 themes. What exactly would the research studies look like? Who would need to be involved? What might the challenges or timeframe be? And what’s the impact for people living with diabetes?

We captured all of this magic on the day and we’re now producing a full report for researchers and research funders alike. We’ll let you know when it’s ready.

Our workshop was just a first step, but one that we hope will help get mental health research higher up the agenda and make sure those living with diabetes get the support they need for their emotional health.

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