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DAFNE and Beyond- Self-Management Education Progra ...
DAFNE and Beyond- Self-Management Education Programs for People Living with Diabetes
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Thank you very much. So I would love this to be interactive. So feel free to interrupt or maybe ask a question or let us know about your own experience. As Ebba said, I'm based in the west of Ireland. And I was in the UK working in Addenbrooke's Hospital in Cambridge when I heard about Daphne in the very early days of the introduction of the program. Are many of you in the audience familiar with Daphne? Yeah, so quite a few, maybe 50%. Yeah, I will explain what the program is about. But yeah, it's been a wonderful experience for me to be part of this collaborative, as it's called. And I'm going to try and represent that in this talk. But yeah, so I'll explain what it is. I'll talk about the program, the self-managed education program, and where it fits in in the modern day pathway. I became a Daphne educator during the COVID pandemic. Our center, like every center, was struggling with delivering face-to-face Daphne courses. So the collaborative pivoted to remote. And I availed of the opportunity to become a Daphne educator. And I'll reflect on that in the talk as well. And then I'll finish up by telling you a little bit about Daphne Plus, which is led by Simon Heller and colleagues in Sheffield. And I'll tell you about our own work in Galway with young adults. So typically, in talks like this, the speaker finishes with acknowledgments. Yeah? I'm actually going to start my talk with acknowledgments. So these three individuals are people that I was introduced to when I moved to the UK to work in the NHS in the year 2000. And they have been a real inspiration for me in my professional life. Two of them, Stephanie and Simon, are academic endocrinologists who both work in the area of hypoglycemia, as it happens. But they saw that their patients in London and in Sheffield were having poor outcomes. People living with type 1 were not achieving the level of blood glucose control that they were hearing about and that they were seeing in other parts of Europe. So they went. And so they're two academic endocrinologists. And then Sue Roberts was the first diabetes lead in the NHS. So she led the clinical program in its very early days. And between the three of them, in my opinion, they changed the approach to type 1 diabetes. Daphne has really influenced people's thinking about structured education, self-management, carbohydrate counting, insulin adjustment. It's hard to change the way people think about a condition. But I believe that these three have done that. And they've definitely influenced me in terms of the work that we've tried to do in Galway. In particular, Sue Roberts. I took on the national lead role in Ireland because I saw what you can do if you're smart and you can figure out how to influence the politicians. That's important. But time moves on. And now the Daphne Collaborative is led by Jackie Elliott. I also want to acknowledge her work and her contribution, not least providing me with quite a few of the slides that I'll be sharing with you on where the Collaborative is. So Jackie came over to Ireland, to Dublin, to meet our trainees because we have to think about the next generation of our endocrine community. And Jackie came to meet with our specialist registrars, a big group of our SPRs, to talk about Daphne and try to enthuse them in the way that I and Ebba and others have been enthused around this programme. So that's Jackie. And then I also want... So there's always people behind the scenes. And in the case of Daphne, these people are all based in North Tyneside, in the north-east of England. But one person in particular, Gil Thomson, who manages the central Daphne office, has just retired. So when I put these slides together, Gil has been leading the Daphne team for maybe 20, 25 years, and she's just been replaced as the Daphne lead manager by Louise Holland. So you're the first to hear about it because she's only just taken up the role. So it's great to see it's embedded in the health system in the UK. Okay, so that's the acknowledgements part. What about the living with diabetes part? So this is a slide that I have got from Jackie Elliott. And it's just... You can see what this slide is attempting to do. Those of us who don't live with diabetes, type 1 diabetes, we don't have to make 31 sometimes difficult decisions in the busy lives that we lead. So this particular person has a lot to juggle and a lot to keep up. We had, in our hospital, we had a display in the lobby of our hospital for World Diabetes Day, the 14th of November last year. And one of our team, who lives with type 1, I think she heard about it through IDF maybe, but she brought some blue balloons. Have you seen this? It's a very effective way of getting a person who doesn't live with diabetes to appreciate what it's like to live with type 1. And so we were in the lobby talking about diabetes with our work colleagues from the hospital. But we had blue balloons that we had to keep up. You couldn't let... The blue balloon cannot hit the floor. So you're there. If I were doing it, I'd be talking to you now and I'd be keeping this balloon up. And it's a very effective way of actually getting us, who don't live with diabetes, to understand what it's like to live with diabetes. You're constantly having to juggle and keep this blue balloon up. So that's where I think Daphne comes in, helping people to maybe get a little bit better at that. And by the way, this is not a Daphne versus technology talk. I don't see it as being one versus the other. Of course, it's about helping people to live well with the condition. So what about the goal of education? I really like this slide and this kind of way of thinking about education from Trish Greenhalgh, who's an academic GP in England. So this is what we know. Those of us who are involved in teaching medical students, it's about giving them the knowledge, the skills, and the attitudes to be good doctors. So this is educating for competence. And a lot of what we do in undergraduate and postgraduate education is around competency. But I like this thought from Trish Greenhalgh, which is that there is something beyond educating for competency, which is educating for capability. So that is providing people with the knowledge, the skills, and the attitudes, but also this ability to adapt and to change and to think independently and think on their feet and juggle that balloon and keep it up. So I find that quite motivating, as I will tell you, when I'm delivering Daphne, to try and... It's not just the black and the white. This is it. There's a lot of gray. And people need to be able to make those decisions themselves, particularly around sick days and exercise. And we can teach that or we can impart that, but actually it's very difficult to do it well. So, and that's really reflected. This is the ADA definition or description of DSME, diabetes self-management education, but they put another S at the end, diabetes self-management education and support. It's giving people with diabetes the knowledge, skills, and the confidence to take on that responsibility for themselves. The other thing that ADA do very well is they recognize that it's a team effort. And within a diabetes clinic like ours in Galway, now we don't have to get recognition, but this is the education recognition program of ADA. And it acknowledges that to do diabetes education well, you need to think about a lot more than just the curriculum. It's about the ethos and the culture and the sort of the acknowledgement that we're not the experts. It's the people living with diabetes need to become the expert. And I think that we haven't done it for reasons of... So, in the States, you have to show that you have a quality program because you won't get reimbursed unless you do. We don't have that obligation or that kind of requirement, but I like to think that we have that ethos. So, structured education programs have become very much part of how we deliver diabetes care in Galway and in many of our diabetes clinics. And actually, it is a different way of thinking about care. It's not the doctor-patient interaction. Of course, that's part of it, but it's the educator and the group, and a lot of people going through these programs learn from each other. And they have a huge amount of experience of life with diabetes, being the expert, as well as having a need for learning. So, we also received recognition. We didn't have to for reasons of reimbursement, but we did get recognition for our diabetes education. My mother, when she saw this, referred to it as the Blessed Art Thou Amongst Women photograph. So, a lot of our educators are nurses, dieticians, some doctors, but, yeah, it's interesting how that has kind of happened. There are very few doctors who have taken on the role of becoming diabetes educators. The other thing that we have benefited from, and this is the influence of Simon Heller and Stephanie Emil, is building an academic program around diabetes-structured education. And, you know, we've had studies, research studies and audits, and, you know, we have benefited from that in terms of the recognition that it brings to our center. So, it's been a very worthwhile endeavor. And now we're part of this journey. So, from the left here are studies in the late 80s, 90s, Michael Berger, the late Michael Berger in Dusseldorf, and Ingrid Mühlhauser and others. With the initial approach to flexible insulin therapy, or, you know, it has different names, but it's this idea of, you know, knowing what you're going to eat and being able to give appropriate amounts of insulin. And then later taken up by people like Thomas Peber in Austria. And then the UK group publishing their UK trial in 2002 and bringing Daphne to the UK. And then our work in Galway and in Ireland looking at two different methods of follow-up of Daphne. So, what is it? This is the curriculum, if you will. This is the five-day version of Daphne. I'll explain that there are other versions. But it's basically a curriculum, a program of education delivered by typically a nurse and a dietician, two Daphne educators who are trained to deliver the program, just like a school teacher is trained to deliver the school curriculum. And as you can see from the description of the different sessions, it has a strong focus on nutrition and in particular, estimating carbohydrate. So, the dietician takes the participants through exercises like in this case, looking at nutrition information on various packages. They will eat together during the week and the lunch or the meal in the middle of the day becomes part of the course, part of the learning. They will also have, if you flip this plate, this food plate or this teaching aid, it will tell you where the carbohydrate is on that plate. Not much in this case with an omelette and salad. And then quite a bit on this plate with beans and toast. So, it's about getting good at knowing what's on the plate in front of you, in particular, knowing where the carbohydrate is, what type of carbohydrate and what that's going to do to your blood glucose and then getting good at matching that with insulin, an appropriate amount of insulin. So, that's really the course. It's delivered either as a five-day consecutive program or as I'll explain, there are variations on that. And then along came COVID and of course, you can't bring a group of people with a chronic condition like type 1 diabetes together, or we couldn't in the early stages of lockdown. So, Daphne, in a very short period of time, pivoted to remote delivery. And this is my desk, my PC. So, I decided, because we weren't able to deliver Daphne in Galway and it had become part of our pathway for type 1, so I signed up to do the remote Daphne educator program and became a Daphne educator. So, the tools here are the Daphne workbook for the not five consecutive days, but one day a week for five consecutive weeks is how it's organized and delivered in the remote. Here's carbs and cals for me to learn about carb counting. Here's the scales if I want to, and you're encouraged as an educator to try and emulate it at home. Oops, I should be using this here. Let me get the laser pointer. You see that? Yeah. So, here's the carbs and cals book. Here's the scales for weighing. This is the educator manual. This is the patient workbook. But importantly, this is the Open University central Daphne resource. So, the Open University worked with Daphne to bring all of their material online. I'm telling you this because it's freely accessible for many, many centres, not just Daphne centres, and I'll come back to that and would be happy to tell you a bit more about it. So, this is the current state of the Daphne Collaborative in the UK and Ireland. I'm really pleased to see this because pre-pandemic, we had, or about maybe four years ago, we had about six centres, I think, in the Republic of Ireland. Now we have about 26, and that has been enabled largely through remote offerings, but also through funding that became available as we were moving specialist teams out into the community. And you can see how prevalent it is in the UK. So, 228 different clinics or hospitals delivering the program. And these are, again, some of the numbers and some of the comments you can see from Daphne graduates, but also from Daphne educators. It's rewarding to deliver the program for a team and for an individual. And a lot of our Daphne educators would say that they really look forward to delivering. It's hard work, but it's very rewarding because they see how it can, not with everybody, but it has the potential to change how people think about and self-manage their condition. And you can see the number of doctors and educators that are currently in the system. One thing that the Daphne collaborative has done very, very well is building in quality assurance into their collaborative. So there is an expectation. There is a requirement that you keep track of the courses you deliver as a center. And you submit a limited data set, but nonetheless a data set to the Daphne database after course delivery, and again at 12 months. So this sense of quality assurance and quality improvement is a very important part of being a Daphne center. We also pay a license fee to Central Daphne because this doesn't just happen, the training and the maintenance of the database. So it's nominal. It's about maybe 5,000 pounds, I think, per annum. And our hospital manager took a little bit of convincing initially, but now she and the hospital are very happy because they see and they hear the value that people place on this course. So this is, again, from Jackie Elliott's slides, but Daphne has done very well. Audit is only as good as the data you put in. So I was really impressed when I saw this when I was writing this talk, that we have over 80% ascertainment now. This is pre and post. So baseline data collection, mainly A1C, weight, insulin dosing, and then it's looked at again 12 months after the course. And these are some of the outcome of A1C with a mean fall in A1C in the order of about six millimole per mole. So that would be about 0.5%. And again, you might say, well, that's not, but that's actually, as you'll see, that's a reduction in A1C without any appreciable weight gain and with huge benefit in terms of quality of life. So the percent of Daphne graduates with an A1C below 58 millimole per mole, which would be 7.5%, I think, A1C, at 12 months is also increasing up to close to 50%. And a couple of things that Daphne does really well and really consistently is it almost eliminates severe hypoglycemia. So getting good at matching insulin to the food is one thing that Daphne does for people who are able to embrace it. And the reduction in severe hypoglycemia is one very strong feature. And one of the things that we fast-track people through this course in Galway, there are certain things that make us do that. One is maybe anticipating pregnancy. I'll come back to pump therapy, but also episodes of severe hypoglycemia because we know it makes a difference. And then the other thing that Daphne does is it reduces episodes of DKA. So again, you can see here that if you count it as the number of DKA episodes or if you count it as the number of participants who experience DKA, either way, it's... And if we had a drug in the diabetes world that was able to achieve these things, we'd all be promoting it. And then finally, and probably most importantly, is that Daphne has recently started collecting what are called PROMs or PREMs, patient-reported outcome measures. And there's limited data on this, so I think this is a small sample, but you can see again that it really has an impact or it really has a benefit from the patient standpoint. And 82% in this sample of people said that over the last year, their quality of life has improved a lot or a little. So this is the current state of the Daphne Collaborative. I mentioned that there are different... So this is the traditional way of delivering Daphne, which has been happening in the UK and Ireland since 2000, face-to-face, five consecutive days. Since 2010, not with a huge uptake. But Daphne has been available as a five-by-one week, so five consecutive weeks, one day a week, face-to-face. And you can see the number of courses. But what's really happened since COVID is that remote Daphne has taken off. And this is already 1,500 courses delivered. These data are from August of this year, and that's 1,500 and increasing. And then over here in response to requests from services around the UK and Ireland, there are two forms of Daphne delivered to people who are already using or about to start pump therapy. So what next for the Daphne Collaborative? Well, technology is certainly, in the part of the world that I practice in, technology is very much happening. Our center in the last 10 years has gone from probably four or 5% pump usage to about 25% now. Our adolescents coming across from pediatrics, 50, 60% of them are using pumps, many of them closed-loop. So Daphne is responding to this by developing an offering for centers, diabetes centers that are involved in delivering closed-loop, hybrid closed-loop pump therapy. And then Daphne is being adapted for people with type 2 diabetes who are on multiple daily injection. And I'm going to tell you briefly about both of those. So this is the Daphne closed-loop essentials offering, which is relatively new. So the UK, you may be aware, is really pushing hybrid closed-loop. You know, NICE and the Department of Health and NHS Diabetes England have been advocating for it. They've ring-fenced funding for it. So what Daphne is doing is it is helping NHS Diabetes and helping centers to figure out if a person with type 1 diabetes is ready for hybrid closed-loop. Do they have, you still need good self-management skills to make technology work. So Daphne has developed, it's like a course, a modified course geared towards their self-management skills, their knowledge, and it has an assessment. It's not a test that you have to pass or fail, but it's actually meant to inform whether you have deficiencies in your self-management training or your self-management skills, and it's meant to help your team to correct any deficiencies that you might have for safer onboarding with hybrid closed-loop. And then from December next month onwards, Daphne has developed, for people who are using closed-loop, a Daphne closed-loop optimization course. Again, less intensive than what I have told you about the traditional or the remote offering. So that's the closed-loop side of things. And then on the type 2 side of things, and I thought it was interesting when I was putting this talk together, this really came from the database, from an observation that people kind of slipped through. People with type 2 diabetes, Daphne is meant to be for people with type 1, but over the years, people with type 2 have got onto the course, and with the benefit of the database and the audit function, the Daphne Collaborative has been able to see, now we're talking like maybe 10 or 11,000 type 1 Daphne graduates. We're talking about 100, 150 type 2, but they were able to examine those and recognize that it actually benefited them. Very little, if any, weight gain and improvement in A1c, and again, in their sense of control over their diabetes. So this is the brother of Daphne, I think, Victor, which is varying, you have to have a catchy title, dose adjustment for normal eating is Daphne, and this is varying insulin doses for changes to routine. And so that's something that I'm not familiar with in terms of delivering it, but I am, hopefully, we'll get familiar with it over time. So that's the current state. It started with three centers, Simon in Sheffield, Stephanie in Kings in London, and Sue Roberts in North Tyneside. It's grown over the pre-COVID era to quite a few courses, including Kuwait, Australia. I just heard another Gulf country has taken it on. So that's pre-pandemic, and then during the pandemic, it has really thrived, and now there are 114 centers, over 60,000 graduates, free open university refreshers offered to those and taken up by those graduates, remote pump courses, remote training, all free, national audit results showing improvement. I showed you some of those. They do webinars on hot topics around self-managing education. I'm going to tell you a little bit about Daphne Plus in a moment, and then there's an annual collaborative, there's the closed-loop course that I mentioned to you, and Victor, which is coming. So Daphne Plus was a response to this sense that going through the course, there's a kind of a honeymoon period where you feel empowered and you feel enabled, and you definitely, as a person living with type 1, manage your diabetes with more confidence, but like most honeymoons, it ends, and I think the psychologists were keen to try and look at how to maintain the motivation and the self-management knowledge and skills that Daphne brings. So that's one part of it, trying to incorporate behavior change training or skills into the follow-up support after Daphne, and the other one is using technology to the best, not hybrid, not pumps and sensors, but rather maybe automated diaries, helping with pattern recognition. I know there's a session on AI tomorrow, so maybe there's a role for this in the Daphne Collaborative, I think is what they were keen to explore. And this was the roadmap for Daphne Plus, a cluster randomization. Centers were randomized to deliver regular five-by-one-week Daphne, or five-by-one-week with this additional element of individual support for the months following the course. And I haven't, I'm pretty certain that it has been published, but I could not find it, and I tried quite hard to look for it over the last few days. I know it was hampered by COVID, so their recruitment of centers, and especially their recruitment of participants was blighted by the pandemic. But I think this will publish, and this will be available to you soon. I want to finish in the last few minutes, and I mentioned at the start that ADA talks about diabetes self-management education and support. We have identified in our young adult cohort in Galway that outcomes are poor. If you look at A1C, this is an audit that we did over 10 years ago now, but our average A1C was 81 millimoles per mole, very, very poor. Comparable, though, to many of the regions of Scotland when we looked at them. So we are not the only ones who struggle with this cohort. So they come across from pediatrics. They're meant to be gaining independence, taking on more autonomy in their diabetes care, but many of them struggle. Don't come to clinic, have lots of issues going on in their lives, and the diabetes is often not a priority. So we have been trying for some years now to try and address this, and I'm going to tell you just very briefly about the D1Now intervention. But first, we repeated this audit, so the audit cycle, as they talk about. So in 2012-13, this was the state of play. Last year, one of our medical students re-audited a similar number of young adults, about 150 in both eras. The difference here is 4% pump usage, about 24% here. So technology has definitely come into play. Average A1C has come down from 80 to 70, but 70 is still very suboptimal control, and that's why I think we need to look at why are they not attending, why are they, and this is a vulnerable group, remember. A few years of suboptimal control can have long-term implications. So we have been working with a colleague in the university, a health behavior change scientist, Molly Byrne, and we had the good sense and the presence of mind to reach out to our young adults, and this is what we call our PPI panel, Public and Patient Involvement is the term, and so we established a young adult panel as far back as 2014. Many of them have outgrown the 18 to 25-year age group, but they help us with the research that we're doing to try and reimagine how we might deliver care to this cohort. And so we came up with an approach that we have piloted, and we're about to embark on, or we are embarking on what's called a definitive trial. So there were three elements to what we piloted. An agenda-setting tool used during the clinic, like a shared decision-making tool, asking what's your agenda, asking young people who come to clinic. We have our agenda, which is mainly biomedical, so their agenda isn't always, we're not always aware of it. We have a support worker who's external to the diabetes team, but supports the young adult in their journey. And then we came across this SMS messaging app called Florence. As it happened, in the pilot, our young people, they liked it initially, and then they got fed up of it, because it was kind of annoying nudging them. So we have dropped Florence from the definitive trial. But this is a description of the pilot, which was done in four centers in Dublin. Again, impacted by the pandemic, but we managed to get 57 young adults through and followed them for 12 months. So now we're gearing up to, but the point of telling you about this is that self-management education, I think, is critical to living well with diabetes, but there are stages of the journey where it may not be necessarily the priority or the solution. And I think in the young adult cohort, support is probably... So we have a daunting task that we're taking on, recruiting 29 young adults across 12 centers and following them for 12 months. We're hoping to recruit some of the recurrent DKA and the young people who don't come to clinic, but who get their diabetes care through unscheduled visits in the emergency department. And we're currently in the middle of trying to get approval for this study. So I think I'm on time. Thank you for your attention. I'd be happy to answer any questions.
Video Summary
The speaker discusses their involvement with the Daphne program, a self-managed education initiative for people with type 1 diabetes, designed to improve their ability to manage their condition through education about carbohydrate counting and insulin adjustment. They began their role as a Daphne educator during the COVID pandemic, transitioning to remote delivery of the courses due to lockdowns. The program's focus is on teaching participants to estimate meal carbohydrates and adjust insulin doses accordingly, thus reducing episodes of severe hypoglycemia and diabetic ketoacidosis and improving patient quality of life and glycemic control. The talk covers the benefits of structured diabetes education, the importance of evolving educational programs to incorporate new technologies such as hybrid closed-loop systems, and the emergence of diabetes education for those with type 2 diabetes using multiple daily injections. Additionally, the speaker introduces Daphne Plus, which aims to maintain motivation and behavior change post-course, and details efforts to support young adults with type 1 diabetes in improving their management skills and quality of life. Overall, the speaker underlines the significance of structured, patient-centered diabetes education and support.
Asset Subtitle
Dr. Sean Dinneen
Keywords
Daphne program
type 1 diabetes
carbohydrate counting
insulin adjustment
diabetes education
remote learning
Daphne Plus
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