Please could you outline the DAWN2™ study? What were the main aims of this research?
It’s been over a decade since the first Diabetes Attitudes Wishes and Needs (DAWN) study showed that psychosocial aspects of diabetes pose specific challenges and barriers to optimal glycaemic control for people living with diabetes.
Over the past decade, there has been a move towards a more person-centred approach to diabetes care but sadly many people have suboptimal diabetes control which places them at greater risk of long-term complications.
Consequently, over 15,000 people with diabetes, their family members and healthcare professionals in seventeen countries, including the UK, were surveyed for the second DAWN study (DAWN2).
Of particular interest were their opinions on different aspects of self-management, the impact and burden of diabetes, psychosocial distress and quality of life, and the healthcare and societal support provided.
In fact, along with other UK healthcare professionals, we presented five posters of DAWN2 data covering many of these topics at the recent Diabetes UK professional conference this year.
By surveying those people across the world who are most involved with diabetes care, it was hoped that we could obtain a 360° perspective of their beliefs and opinions on current practice in their own countries, as well as identifying their needs and the potential drivers for enhanced self-management.
The overall goal of the study was to identify ways that we can improve the care of people with diabetes.
It was reported that the study found over a quarter of people with diabetes experience diabetes-related distress. How was this defined and measured?
Diabetes distress was measured in DAWN2 using the short-form Problem Areas in Diabetes Scale, commonly known as the PAID-5 scale. This is a standard, validated tool used by healthcare professionals to assess diabetes-related emotional distress in people with diabetes; it is a short, multiple choice questionnaire that assesses negative emotions related to diabetes such as anger, fear and frustration.
The PAID-5 questionnaire is completed by individuals with diabetes and each answer is scored individually before being converted to provide a total score on a scale between 0 and 100; the higher the score, the higher the likelihood that the individual is experiencing emotional distress.
For those people scoring higher than 40 on the PAID-5 scale this indicates that they have a high level of distress.
As well as giving the healthcare professional an idea of the level of distress that an individual is feeling so that this can be addressed, PAID-5 can also be a useful tool to help track emotional changes over time following an individual receiving education or therapeutic intervention.
What impact does diabetes have on family members?
Diabetes is often described as a ‘family’ disease. The impact on family members cannot be under-estimated, both for people living with type 1 and type 2 diabetes.
Like people with diabetes, family members often also feel the burden of diabetes and this can affect their own quality of life.
Family members were concerned about the future and the long-term complications associated with diabetes. However, a quarter of family members indicated that diabetes had also had a positive impact on their relationship with the person with diabetes.
Could you please outline the diabetes education programs that are available? How many people with diabetes and family members attend such classes?
There are several different structured education courses available nationally for people with diabetes, they vary in length and the topics covered.
For people with type 1 diabetes there is the Dose Adjustment for Normal Eating programme, known as DAFNE, which aims to provide individuals with the knowledge and skills to estimate the carbohydrate content in their meals and then inject the correct dose of insulin.
For those with type 2 diabetes, or who are at high risk of developing type 2 diabetes, there is DESMOND, the 'Diabetes Education and Self-Management for Ongoing and Newly Diagnosed’ education programme.
DESMOND is a structured education programme that offers various modules tailored to the needs of those individuals who are newly diagnosed, those with established diabetes, those at high risk of developing type 2 diabetes and a language specific module for those whose first language is not English.
In addition to DAFNE and DESMOND, there is the X-PERT (eXpert Patient Education versus Routine Treatment) Diabetes Programme for people with type 2 diabetes, the X-PERT Insulin Programme for people with type 1 or type 2 diabetes and ASPIRE (A Skills Programme in matching Insulin Requirements to Eating and exercise) for people with type 1 diabetes.
The availability of these courses can differ depending on where you live in the country, however, there may also be other courses and initiatives available locally.
It’s important that people are able to access education in a way that suits their lifestyle and preference. Unfortunately though, DAWN2 has shown that availability is variable and even when they are available, sometimes attendance is low.
The DAWN2 study showed that only 20 percent of people with diabetes had attended a structured diabetes education course, such as DAFNE, in the previous 12 months, although more, about 40 percent, had attended a course over a year ago.
Interestingly though, of those who had attended an education course, up to three quarters had found it useful. Unfortunately, family members were less likely to have received structured education, only 10 percent had attended a course in the previous year.
What role does education play in the wider psychosocial support services for people with diabetes?
Education is an essential cornerstone to wider psychosocial support services for people with diabetes. Only by helping people to learn the core skills required for optimal self-management can we help people to achieve their goals for self-management.
We wouldn’t expect somebody to jump in a car without any lessons and be able to drive safely. We can’t expect people to achieve optimal diabetes self-management if we don’t equip them with the tools needed to be able to do so.
Please can you outline the national action plan that aims to improve diabetes care in the UK?
Based on the UK for DAWN2 study, we have developed a DAWN2 National Action Plan (NAP). In this plan, we have identified those unmet needs and barriers to self-management that are in most need of being addressed to improve the overall care for people with diabetes in the UK.
Experts from different areas of diabetes care including patient associations, national experts in diabetes, healthcare professionals and commissioners are working together on projects that we hope will benefit those people with diabetes and all those who help care for them.
For individuals with diabetes, we want to be able to help to increase their understanding of diabetes with a view to promoting their further involvement in their own care and also to encourage them to use the resources available to help them manage their diabetes effectively.
For healthcare professionals, we need to promote a better awareness of the need for people with diabetes, and their family members, to receive psychosocial support and education and to refer them for structured education or to discuss psychosocial aspects of care.
The types of projects we have proposed, many of which have already been initiated, include publications, congress activities, education and commissioning packs and web-based tools.
Already, several manuscripts are in development and five posters were presented at the Diabetes UK professional conference earlier this year.
My own group at the University of Southampton have initiated a pilot study to test a web-based cognitive behavioural therapy tool in the UK. These projects will be completed over the next few years after which their success can be evaluated.
What hurdles need to be overcome in order to achieve better diabetes care?
National Audit Data shows persistent poor diabetes outcomes for people in the UK. We need to rethink the model of healthcare we deliver and I suggest a move away from a traditional medical model, to a much more holistic approach is the way forward for better outcomes.
Perhaps the biggest hurdle will be to change soundbites such as ‘no decision about me without me’ into action. Healthcare professionals have plenty of expertise on the biomedical and psychological factors of diabetes, however only the person living with it has the expertise on their own diabetes.
Working together, as equal experts, providing truly patient-centred, collaborative healthcare to help people manage their diabetes in the context of their own lives to the best of their ability remains the biggest hurdle to both biomedical and psychosocial outcomes.
What do you think the future holds for diabetes care?
I think the future is bright for diabetes. Whilst we search for a cure, there are many promising developments.
The advent of new technologies such as wider availability of continuous glucose monitoring and cutting edge research into closed loop / artificial pancreas technologies is exciting.
New therapies for type 2 diabetes will help a lot and if we are able to make a shift towards greater communication and holistic healthcare, then we will be on the right track.
Where can readers find more information?
There are a number of publications now available on the key global outcomes from DAWN2 for people with diabetes, family members and healthcare professionals, which readers can get through the Diabetic Medicine website by searching for ‘DAWN2’ (http://onlinelibrary.wiley.com/journal/10.1111/%28ISSN%291464-5491, the articles are free to download.
There is also a website dedicated to the two DAWN studies and initiatives (www.dawnstudy.com), which includes tools and resources and a link to a magazine ‘Diabetes Voice’ with articles describing the findings from DAWN2.
However, for general information on diabetes the Diabetes UK website is an excellent resource (http://www.diabetes.org.uk/).
About Katharine Barnard
Katharine Barnard is an Associate Professor and Health Psychologist at the University of Southampton specialising in the psychosocial impact and management of diabetes.
She has a longstanding research interest in the psychosocial issues associated with diabetes and its management. Through this research, a greater understanding has been gained of the factors that contribute to therapy choices and quality of life; and the impact that diabetes and its’ treatment has on both the individuals with the condition and their family members.
Professor Barnard is Principal Investigator on the KALMOD: Behaviours for Health research programme. She is also currently leading on psychosocial aspects of diabetes within several multi-centre RCTs evaluating diabetes technologies such as closed-loop, insulin pump therapy, bolus calculators and web-based tools to alleviate depression.
Professor Barnard is the UK psychological lead on global diabetes attitudes wishes and needs research; is Principal Investigator on a programme of research to minimise alcohol associated risks for young adults with T1DM; is engaged in ongoing research in co-morbid depression and diabetes; health technology assessment; and patient-professional communication to support enhanced self-management and motivation.
Professor Barnard is Chair of the Diabetes UK Annual Professional Conference, Expert Advisor to NICE, Associate Lecturer at a number of UK universities and sits on the editorial boards of several journals and funding bodies.
Mortality risk higher for those diagnosed with type 2 diabetes at younger ages