The approach to DAWN2™ was inspired by a number of theoretical frameworks including the systemic approach of the Innovative Care for Chronic Conditions framework (ICCC) of the World Health Organization (WHO) as well as the ‘Patients Needs Model’ developed from the DAWN™ initiative.
ME: Being able to cope with my condition, and living a full, healthy and productive life
FAMILY AND FRIENDS: Emotional and practical support in all aspects of my condition
Medical care and treatment: Access to quality diagnosis, treatment, care and information
Work/school: Obtaining support for, and understanding of, my condition
Living: Having the same opportunities to enjoy life as everybody else
SOCIETY: A healthcare system, government and public that are willing to listen, and to change, to be supportive of my condition
People with diabetes depend on support from many different sources to manage their condition successfully. They depend on access to proper healthcare and treatment, and also on access to the right kind of emotional, social and societal support to live full and healthy lives.
The Patient Needs Model - one of several concepts developed from the DAWN™ study results - highlights these key needs. The model illustrates the various sources of support on which people with diabetes depend: family, friends, healthcare, work, school and society at large. By taking a 360° approach, the DAWN2™ study assesses challenges and opportunities around the support offered within each of these levels, as visualised in the Patient Needs model.
DAWN2™ involves three separate quantitative surveys: one for people with diabetes, one for family members and one for healthcare professionals. Each of these encompasses a qualitative open-ended component.
The quantitative surveys recruited 15,438 participants from 17 countries: Algeria, Canada, China, Denmark, France, Germany, India, Italy, Japan, Mexico, The Netherlands, Poland, Russia, Spain, Turkey, UK and USA. Each country’s approximately 900 participants included 500 people with diabetes, 120 family members and 280 healthcare professionals, as shown in the following figure:
The surveys were conducted either online, by telephone or in-person, with telephone and in-person surveys reserved for people with diabetes and their family members. The method chosen depended on internet penetration in a given country. Professional translation(s) to local language(s) were used in all cases, except for Indian health care professionals, where English was used.
The overall inclusion criteria were:
Further specific criteria for each stakeholder group are specified in Peyrot et al. Diabetes Research and Clinical Practice, 2013*.
The surveys were developed by the Global DAWN2™ survey working group, in accordance with a person-centred model for chronic care and taking into account input from many leading experts in diabetes. Surveys for each stakeholder group used validated instruments and new exploratory questions and mirrored each other where possible. The topics are listed in Peyrot et al. Diabetes Research and Clinical Practice, 2013*.
The study was conducted in accordance with the relevant ethical requirements of each country and followed the guidelines of survey research organisations and Good Pharmacoepidemiology Practices.
Open-ended questions were placed at the end of the multinational quantitative surveys to address the challenges, successes and wishes for improvements in diabetes management for each of the three stakeholder groups. This also allowed for inclusion of the personal stories of experiences that have impacted people with diabetes, and personal stories of family members about how living with someone with diabetes has impacted their life. The data were systematically coded according to a global codebook developed using a line-by-line emergent coding process in cooperation with collaborators in each of the DAWN2™countries.
Both the quantitative and qualitative results will be disseminated through key scientific channels from 2013 onwards.
* Peyrot M, et al. on behalf of the Global DAWN2 (Diabetes Attitudes Wishes and Needs) Study Group: A multinational, multi-stakeholder study of psychosocial issues in diabetes and person-centred diabetes care. Diabetes Research and Clinical Practice, 2013;99:174-84.
A wide variety of patient advocates and experts in person-centred diabetes care took part in early scoping and design of the DAWN2™ study and continued to contribute throughout all the study’s phases. And now, in interpretation and analysis phase, all stakeholders are actively involved in discussing and utilizing the study to drive positive change.
Since the DAWN™ study in 2001, the DAWN™ initiative has inspired activities in more than 35 countries, and the study results are being used for education and training purposes around the world. Also under the umbrella of DAWN™, a number of national and multi-national research projects have been carried out, with the aim of continuously increasing our understanding of life with diabetes and the real challenges involved in managing and treating the condition well.
The design of the DAWN2™ study was guided by important international declarations including the IDF's international Charter of Rights and Responsibilities of People with Diabetes(PDF), the IAPO Declaration on Patient-Centred Healthcare(PDF), the WHO Innovative Care for Chronic Conditions framework (ICCC)(PDF), and the Global DAWN™Call to Action(PDF).
Involving family members of people with diabetes
Research about the experiences and challenges of adult family members or caregivers of adult people with diabetes is very limited, and there was no previous international equivalent to the family survey within the DAWN2™ study.
As part of the DAWN2™ study, the global study partner, Steno Health Promotion Center, has initiated a systematic review of the literature to examine current knowledge about effective strategies for supporting families with diabetes, rather than just the individual persons with the condition.
Benchmarking psychosocial indicators
The ability to measure the factors requiring change is essential to drive change, identify best practices and document improvements in healthcare. In most countries today, the availability and quality of self-management and psychosocial support for people with chronic illnesses are not measured, despite the increasing consensus that these elements are a pivotal part of chronic illness care. The DAWN2™ study represents the first international effort dedicated to establishing a scientifically validated benchmarking system for use within countries or as a resource for comparisons across countries on a number of broadly agreed psychosocial indicators of diabetes care.
As a result of the DAWN2™ study, a number of scientifically validated questionnaires for people with diabetes, family members, general practictioners, diabetologists, nurses, dieticians and policy-makers are now available in 23 languages. Key questionnaires can be used to extend and continue benchmarking of person-centred aspects of diabetes care using the DAWN2™ study as a first baseline and multinational validation study.
The Changing Diabetes® Barometer represents a long-standing effort to facilitate international and national improvements in diabetes care by measuring the state of care, sharing results and working to apply best practices to improve on gaps in care. Newly published national DAWN2™ results have now been integrated into the Changing Diabetes® Barometer to facilitate the integrated use of psychosocial indicators for quality improvement, using the concept of measure-share-improve.
With DAWN2™, validated questionnaires have become available that allow for the measurement of indicators of active engagement, self-management, diabetes related quality of life and availability of person-centred care, education and community support.
A key learning from a decade of efforts to promote psychosocial care and education for people with diabetes under the DAWN™ initiative is that policy change is a major driver of change and necessary for sustainable improvements.
The need for such policy change was recognized early by the DAWN2™ study group and led to the DAWN2™s policy assessment initiative, which involved national experts in each of the 17 participating countries and a systematic collection of information about relevant policies for patient involvement, education and person-centred diabetes or chronic illness care. Results are currently being applied within each country to identify national gaps and find relevant best practices from other countries.
While ‘closed’ questions (e.g. multiple choice questions) can be highly useful for quantifying and comparing challenges and experiences of people, asking people to use their own words to talk about their personal successes, challenges and wishes for the future adds important, complementary and nuanced information. The DAWN2™ study includes this information through the use of open-ended questions to people with diabetes, family members and healthcare professionals.
In health psychology research, the focus is often on mental health problems and impairments. This is important as a starting point for determining the need for support and resources, however there is a significant gap today in our understanding of the role of positive psychology in diabetes and of successful ways of coping with diabetes. The DAWN2™ study incorporates newly developed questions, which include both positive and negative experiences related to diabetes. Together with the large qualitative research component, these ensure that the DAWN2™ study allows for important new international research into positive resources and experiences related to diabetes and potential opportunities for individual better practice sharing among people with diabetes, family members and even healthcare professionals.