The EASD Diabetes Distress Guideline is an opportunity to improve and optimise diabetes care to support people with diabetes. What would your hopes be for the impacts of this guideline? It should become a routine part of consultations to be able to talk about the emotional side of living with diabetes. Hi everyone and welcome to this Diabetes Perspectives episode on decoding the EASD Diabetes Distress Guideline. This is the first-ever clinical guideline on diabetes distress. I'm Jane Speight. I'm the Foundation Director of the Australian Centre for Behavioural Research in Diabetes, which is a partnership between Diabetes Victoria and Deakin University in Melbourne. I'm joined by my much appreciated colleague, Professor Richard Holt, who served with me as co-chair on the Guideline Development Panel. Thank you, Jane. I'm Richard Holt, I'm Professor of Diabetes and Endocrionology at the University of Southampton in the UK, and it's been a real pleasure and an honour to work with you, Jane, on the development of this guideline. We presented it for the first time at the EASD Meeting, but it's of course a culmination of work over a number of years. So three years ago, the EASD Board made the bold and forward-thinking decision to create its own guidelines. It then set up the Guideline Oversight Committee to try to create a process for developing the guidelines. And the reason why we have a guideline on diabetes disstress is because the Oversight Committee went out to the membership to ask: What are the topics that have the highest priority? And I was delighted to see that the membership chose distress as the top topic. And I think that's great, because it shows professional recognition of the issue of diabetes distress, but it is also very person-centred and understands the burden that people living with diabetes experience from a day-to-day basis. So when we put the Guideline Development Panel together, it was really important that we involved people with lived experience of diabetes bringing their expertise alongside clinical expertise and methodological expertise in order to create a Guideline Development Panel that was going to reflect the needs of people with diabetes. And today's Diabetes Perspectives’ is different, because we're actually joined by one of our experts with lived experience. So I'd like to introduce Michelle, who is going to tell us a little bit about herself. Thanks, Richard. I'm Michelle Law. I'm a person living with type 1 diabetes. I was diagnosed 18 years ago, and about seven years ago, I started a blog called Pumps & Pricks to write about my experiences of living with type 1 diabetes. And I also get involved in patient and public involvement (PPI) work where I can. So I'm involved in the Exeter Diabetes PPI group, which is a fantastic opportunity to see what's coming through the pipeline on the research side. Michelle, it's been absolutely amazing working with you over the last two years during the development, but Jane, could you tell us a little bit more about diabetes distress? So diabetes distress is that emotional burden that people experience when they're living with and managing diabetes day-in, day-out. So it's the worries, the frustrations, sometimes feelings of guilt or overwhelm, sadness, annoyance, frustrations with all of the things that it takes to manage diabetes. So where the glucose levels are, whether they're high or whether they're low. Actually monitoring the glucose levels and what those numbers might mean. What it takes to manage other aspects of living with diabetes, and also interactions with other people, and potentially sometimes the stigma of those social interactions can be very distressing for people too. And not to mention, of course, the worries about long-term complications, the possibility of them or actually managing those complications if someone already has them. So there's a lot in that. It's not depression. It's not a generic condition. It is specific to living with diabetes. For that reason, it's really important that diabetes health professionals understand it and are prepared to talk about that in clinic with people living with diabetes. We know that over a 9- to-18 month period, about one in two people will experience diabetes distress during that period of time. It ebbs and flows, as you know, things do in life. And also we know that around four in five people are experiencing some aspect of living with their diabetes as being distressing. So it might not be everything, but one particular area might be particularly distressing. And that's still something that health professionals can support with. Diabetes distress is impacting on people's ability to self-care. It impacts on their quality of life, sometimes on their relationships with other people. And it also has impacts in terms of their health. Their HbA1c levels tend to be higher when people are experiencing diabetes distress. Greater morbidity, premature mortality, unfortunately. So having said that, Michelle, we would really like to hear from you about your experiences of diabetes distress and why it's important to have this guideline now. So for me personally, Jane, diabetes distress, in some way, shape, or form, is part and parcel of living with diabetes. Because diabetes is such a relentless condition, it always brings challenges. And sometimes those challenges can feel overwhelming and that can create a significant emotional burden. So in my own experience, I've had both the bad and the good of interactions with healthcare professionals when talking about what makes diabetes hard. The most challenging was when presenting with high levels of diabetes distress from my perspective, which meant that I wasn't testing my blood sugar very much. The reaction from my healthcare professional was to tell me off and to say that I risked having my pump taken away, which obviously wasn't helpful at all and didn't really contribute anything to making me feel better. On the plus side, when I did get upset in an appointment once, and my doctor said to me: Diabetes is a really difficult condition, and we're giving you imperfect tools to manage it with. So perfection is just not possible. And that connection and understanding really felt reassuring and comforting at that time. She wasn't expecting me to be perfect, and it's important that this guideline recognises that and attempts to try to help clinicians to help people with diabetes with something that, for many of us, is part of our daily experience of life with diabetes. Thanks, Michelle. That's such a powerful statement. We might now just turn to what it took to achieve the guideline. So Richard, given that this was the EASD’s first-ever guideline, what were the learnings, do you think, from the process that we've undertaken? if we go back even before we started, the Guideline Oversight Committee decided that we needed to follow a standard, a well-defined process, and we used the GRADE methodology that's been established to develop guidelines. And that process essentially means that we create clinical questions that we want to ask around the subject. We specifically divided those questions into people with type 1 diabetes and people with type 2 diabetes. And we also created clinical questions around the assessments of diabetes distress, and also the management of distress. we divided into three main parts: So we first looked at psychological interventions. We also looked at educational interventions. And then we looked at a number of miscellaneous interventions that ranged from things like peer support through glucose monitoring through pump devices in order to think about what we might do to reduce the amount of distress for people with diabetes. So having created those clinical questions, we then commissioned an evidence synthesis team to go to the literature and actually look to see what evidence was available. In order to answer each of those questions, we then reviewed that evidence and together with our methodologists, we then created draft recommendations, which we discussed and ended up in the guideline. But as you remember very well, it was possible to do that for the management of diabetes distress, because our evidence synthesis team, run through Amsterdam University Medical College, identified nearly 250 papers addressing that. But they weren't able to do that for assessments. And we had some very robust discussions within the guideline development about how we could address the problem of assessments. So we really did need a way of making sure that health professionals would know how to assess diabetes distress in clinical practice. And we know from literature and the research that many of us have done in this area, that health professional feel a bit lost in the space, actually. We realised, of course, that we're not going to find the evidence for this in randomised controlled trials. They just haven't been done. So what happened was that we were very fortunate that we had Professor Jackie Sturt from King's College London working with us on the Guideline Development Panel. And she had recently won a massive NIHR grant in the UK, also funded by Diabetes UK, for a project called D-Stress What a coincidence! Which was fantastic, because we got talking about this issue, and there was a great opportunity here, because within the D-Stress project, there's a team that are doing realist reviews. Now, the realist review is essentially looking at observational studies, qualitative studies, any type of evidence that might give us an understanding of what matters to people with diabetes. Do they want to talk about this with their health professionals? How to health professionals feel about talking about this? What are the limitations for them or the challenges for them? What is useful and when is it useful? And who do people with diabetes want to talk to? And how should that be managed? So questions around: How do you assess it? Do you ask open-ended questions or do you use valid and reliable assessment tools? And all of these things can be found in the literature. So the team at King's undertook two realist reviews: One was focussed on type 1 diabetes, one was focussed on type 2, for good reasons that there would be different issues affecting those different populations in terms of how they would like to be addressing diabetes distress in clinical practice. The evidence from realist reviews can't be used to form GRADE recommendations. That's not appropriate in that methodology. What we were able to do was to form good practice statements. And good practice statements are statements where there is ethical and evidential imperative to do the right thing. You've been talking about the new methodology, and it's quite complex isn't it? Absolutely. It was a challenging process for all of us. Michelle, what was that experience like for you? Being part of the Guideline Development Panel has been a really wonderful experience overall. Having the opportunity to connect with and have deep conversations with experts in this field that I care very deeply about has been absolutely brilliant. It's also felt that my expertise as a person living with diabetes has really brought value to the process. And so while some of the challenges were that some of the material was very technical, some of the sessions that I was in were very technical, very statistical, lots around research methodology and so on, that was no barrier to being fully engaged and involved in the process. Another challenge has been it's been an extremely heavy workload. So there's also obviously the emotional labour that you bring to the project, and that can sometimes be quite difficult. I think the other thing is that I have to remember that I bring my own biases, my own experiences, my own perspectives, and that clearly I don't represent every person with type 1 diabetes. And so I can make my point, but I also have to accept that it's just one point of view. But it's been wonderful to be part of. And after all of that work, to have something very tangible that can go out into the world that should over time make a real positive difference to the community, I feel very, very proud of. Michelle, it's been absolutely tremendous working with you. The insights that you and Walter Jensen brought to the process were completely invaluable. So, Jane, coming back to you, I think we need to actually dive into the guideline itself. So perhaps you could tell us a little bit about the good clinical practice statements around the assessment of diabetes distress? Thanks, Richard. Yeah. We've got eight good practice statements, about the assessment of diabetes distress in clinical practice. And they go through from normalising diabetes distress, in other words, you need to mention the emotional burden in every consultation to normalise that this is a perfectly natural experience to be having, and it's perfectly okay to be talking about this in the clinical context. Need to be asking questions about this, open-ended questions, not: How are you feeling? Yes or no? Okay? Thanks very much. But: What's challenging you the most about living with diabetes at the moment? What are you finding most bothersome about it? And then you start to explore what's going on for the person with that. And we also have a recommendation around using valid and reliable assessment tools, of which there are many, and those are listed in the guideline. And the important reason for doing that is to be able to quantify that experience so that it can be monitored over time, so that we can see when it's ebbing and flowing so that we can understand what's going on for that person. And that can be recorded in the clinical notes, along with all of the other numbers that are important in diabetes. So those good practice statements go on to talk about the fact that we need to be discussing the findings of that assessment with the person, and making sure that we communicate that with other members of the healthcare team, who may need to be involved in their care. And finally, there's a statement in there about the support and who provides that support. And some diabetes health professionals may be thinking that this is the remit of the psychologists, of social workers, other people working in the mental health area. But actually this is the remit of diabetes and general health professionals. Yeah, absolutely. It's my responsibility as a doctor, just as much as it is yours as a psychologist. Absolutely. But the key thing here is: Do you feel that you have the confidence and the skills to manage that conversation in the clinical consultation? So it might be that some health professionals need to reflect on whether they do have that. And there is now training available and guidance that can support health professionals in upskilling in this area. Michelle what do you think are the implications of those good practice statement? The good practice statements, when I first read them, I actually felt quite emotional because of the importance that every single one of those good practice statements has. They sound so simple. But the first one is to simply have a conversation at every appointment. That would just be groundbreaking and would be so beneficial to people with diabetes if they felt that they were walking into an environment where they trusted their care providers to be understanding, and caring, and thoughtful about what they're going through around the daily tasks of living with diabetes. A really, really important point that was raised as part of the good practice statements is that often people are asked to complete diabetes distress assessment questionnaires ahead of an appointment. I've had the experience where I've completed those assessments and handed them in, and they've not been referred to at all in the consultation. That's felt like a missed opportunity, or it's felt that my efforts and my feelings around carefully scoring how I'm feeling across those different metrics doesn't really matter. And so it's almost worse to invite someone to think they're going to have a conversation about their emotional well-being and then not to have that conversation. And it's, these guidelines address that point as well. It explicitly says in the good practice statements that there should be a conversation about the scoring on an assessment, no matter what the score, even if the person is not experiencing elevated levels of diabetes distress, it should be talked about routinely, whether someone's feeling good or feeling not so good. thank you very much, Michelle. So if I could perhaps just come back to Jane, we've talked already about the assessments good clinical practice statements, but what about the management? What should healthcare professionals do if somebody is identified as having diabetes distress? That eighth good practice statement is actually about the support that diabetes health, and health professionals, and general health professionals can provide if they feel they have the confidence and the skills to do so. So that's the first thing is: Don't think that you necessarily have to refer someone to a psychologist, or some other mental health professional, or a to a nurse, or some other person in the team, just because you've identified that this person is experiencing diabetes distress, because there will be things that you can talk about in the consultation and that you can do to support that person with that. And sometimes you don't need to be fixing it, you just need to be there to listen and support. So that's the first thing. But then when we move on to those management recommendations, what we found was that we had the strongest evidence for supporting adults with type 1. There was evidence for psychological interventions being effective in reducing diabetes distress. Things like cognitive behavioural therapy, so CBT, mindfulness-based approaches, motivational interviewing, all those sorts of approaches that are typically done in a sort of a therapeutic situation, typically with a mental health professional. The other key recommendation for adults with type 1 diabetes is that continuous glucose monitoring is effective in reducing diabetes distress. So that's a really important thing that actually you can provide some technology which is going to support someone by giving them access to understanding their glucose levels, having access to all of that information and and it providing some reassurance for them and enabling them to know when they might be at risk of hypoglycaemia and so on. So, it's basically alleviating that uncertainty that can be so prominent for people living with diabetes. When we think about the technology, we also looked at automated insulin devices. And we were slightly surprised by the results, weren’t we? There was a little surprise finding there. So the randomised controlled trials have shown evidence that is not in favour of reducing diabetes distress. Now, that's not to say that automated insulin delivery devices are not useful per se, for other very good reasons. So we're not suggesting for one moment that people should not be using them, but just not specifically for the purpose of reducing diabetes distress. And we have looked into that literature and scratched our heads over it, didn’t we, about why that might be. And we think that's because that we actually found very limited numbers of trials within the time period that we were able to search that literature and also those trials were often using older forms of the technology, and we know how rapidly the technology is moving on. So it's improving all the time. Another key point there was that diabetes distress was typically assessed as a secondary or even tertiary endpoint in those trials. But actually most people coming into those trials didn't have a high level of distress at baseline, and therefore we weren't able to observe that there was any reduction in diabetes distress. So that would be an interesting space to watch in future years. Probably even in the last 12 months that literature may have already moved on. But I think the real key message that will perhaps come from us is that when we're thinking about clinical trials in this area, we do need to have this information, we need to have it presented in a way that's easily accessible, and then hopefully we'll have a better evidence base next time around. And I have a personal viewpoint on this as well. It is that if we're doing any trials with humans, with technology, we need to be understanding that experience. So if you're conducting a trial and you're looking at the impact of technologies, and you're only looking at the HbA1c and the time in range, and its impact on hypoglycaemia rates, and impaired awareness and so on, but you're not asking people to complete some questionnaires about the extent to which they're experiencing diabetes distress, or indeed other outcomes that may be important subjectively to that person, then we're doing a disservice to people with diabetes, because we're not bringing that literature forward to understand how those technologies are actually impacting on people. Absolutely. So we've been talking about type 1 diabetes so far, and we took a very deliberate decision to separate out type to separate out type 1 diabetes and type 2 diabetes, because the management burden, things like stigma, the treatments are very different between the two conditions. But what were the recommendations for people with type 2 diabetes in diabetes distress? Yeah. So what we found for adults with type 2 diabetes is that, again, psychological interventions are effective in reducing diabetes distress, but so are psychoeducational interventions, and education interventions. So, it's possible that someone experiencing diabetes distress might benefit from going on an education programme, a one-day programme, or doing some kind of online training around the management of diabetes, because that would upskill them in things that they're feeling that they don't understand about their diabetes. And those are the things that are causing overwhelm, or frustrations, or that feeling of not really knowing what you're doing with all of this. And that's why people are distressed about it. So I think that's a really important distinction that we found that for type 2 diabetes, but we didn't find that for type 1. But what about technology for people with type 2 diabetes? Yeah, this was another great reason why we separated the two types of diabetes, because we saw in type 1 that CGM is effective in reducing diabetes distress, but we didn't see that in type 2 diabetes. And again, I think that's a really important finding. And like the automated insulin delivery with type 1, I think this is going to be another emerging area of evidence in the future where we're seeing more trials coming through in type 2 diabetes for CGM, and I think that is going to be an evolving space where we may actually see a change in this recommendation in the future. So Jane, we've come to the end, well, let's perhaps say, the end of the beginning in this process. We've got to the point to the draft, and we're obviously going to be working more. But where do you see the implications of the guideline and where we go in terms of implementation? Well, we learned a wonderful new word, didn't we, during this process called “adolopment”, and this is a contraction of three separate words: So adoption, adaptation, and development. So when health professional are looking at this guideline, they can think about adopting the guideline wholesale as it is. They can think about, well, it won't work particularly well in my context for X, Y or Z reasons. In that case, we may need to make some small adaptations to the guideline. Or there may be some developments that need to happen. So there are a number of ways in which this guideline can be implemented: in various countries, in various healthcare contexts, and of course, so many healthcare settings are very different. The UK is very different to Germany, and very different to Spain, and so on. So of course, each healthcare setting in each country is going to need to think about how they adopt or adapt this guideline to their context for that to be well implemented. So Jane, I know you're the Chair of the PsychoSocial Aspects of Diabetes Study Group, a reference group for the EASD. And I understand during this year's PSAD Meeting, there was a discussion among the delegates attending about how we might think about implementing the guideline. We all met or many of us met in Cluj for our annual conference, and we had a workshop about the guideline. We tasked the PSAD membership who were there with brainstorming around what the implementation opportunities and challenges might be, and these broadly come into three themes. So the first is the promotion of the guideline. Health professionals need to know about it. So this is about, how do we get that out there? And certainly what we don't want is for health professionals to be thinking: Oh my goodness, this is just more work! Actually, this is an opportunity to improve and optimise diabetes care to support people with diabetes. And I do believe, and I think the evidence backs me up on this, is that when health professionals integrate this type of approach into their clinical practice, they actually gain a lot from it themselves as well in terms of their own personal job satisfaction. So I think that's a really important point to be making in terms of how this will roll out, and how people perceive this guideline, and the adoption of this in their context. So it's an opportunity to empower health professionals to have maybe a slightly different role, or to incorporate something new into their practice. That there's as well roles for diabetes organisations to be advocating on behalf of people with diabetes. And of course, there's the pester power that people with diabetes themselves can bring to bear on this if their health professionals are not adopting this guideline quickly enough, they know about it, then they can actually ask for this to be implemented in their clinical practice. And they would be quite right to be doing that, I think. So those are some of the things that we thought about in terms of how it can be promoted. But you need resources to promote as well. And just producing this big technical report of a guideline, is not necessarily, it's not going to be bedtime reading for everyone. Surely not. Maybe just for you and me, Richard. So we need to provide plain language summaries of this guideline. So distil it right down to what are the important points that people need to know for different disciplines, and also for people with diabetes. And someone mentioned putting the recommendations on a postcard that people with diabetes could take to their clinic and pass to their health professional to encourage them to be doing this. But we also need to be thinking about the fact that this is the EASD guideline and how many languages are spoken across Europe, and indeed across the world. So there may well need to be linguistic translations of the guideline to make that work in various contexts. There may need to be some cultural adaptation of the guideline. And then, of course, when we move on to the practical side of it, some people may feel that they need some training in this space. So it's really important that the EASD and other organisations take a key role in making sure that those training opportunities and educational opportunities are available. There's all sorts of opportunities for putting resources together that will enable this guideline to be implemented well. So we've been talking so far, Jane, a lot about healthcare professionals and how we might actually change clinical practice within a healthcare professional setting, but Michelle, I mean, what would your hopes be for the impacts of this guideline? So, there is a real gap in the care that people receive around the emotional side of diabetes. And I think this guideline is really going to help to shine the spotlight on that fact and give some tangible recommendations for how clinicians can support people with the emotional side of diabetes going forward. It should become a routine part of consultations to be able to talk about the emotional side of living with diabetes. And that's not exclusively when people are having emotional challenges. It's when people might feel that they're coping really well and actually being able to recognise that, and the fact that it becomes a part of people's regular care interactions, will give people more opportunities to think about how they're feeling and know that they have opportunities to talk about those feelings, even if they become more difficult in the future, and know that it's something that's on the agenda, and that they will be supported with. Michelle, thank you so much for your wonderful insights. And I absolutely feel that trying to address the diabetes distress within the clinic is better for the clinicians in that they feel that they are providing much better holistic care including that. And I think you've really illustrated very clearly how this guideline is going to make a great difference to people living with diabetes. So thank you once again. Jane, also thank you for the conversation today. It's been great talking about the guideline again. And ladies and gentlemen, thank you so much for watching the Diabetes Perspectives episode on the decoding of the EASD Diabetes Distress Guideline, the first-ever EASD guideline. And our hope is that this guideline and today's episode will help you to improve the support that you can offer to people living with diabetes. Because, let's face it, there is no physical health without mental health.