Diabetes Voice by International Diabetes Federation

Volume 58 â&#x20AC;&#x201C; December 2013

SPECIAL ISS U E 2

Global perspectives on diabetes

DAWN2: Assessing psychosocial support for people with diabetes and their families

50 29

21 DiabetesVoice

Contents

Diabetes Views

News in Brief

Asking, listening and responding A decade of progress to implement the DAWN ‘Call to Action’

Martha Mitchell Funnell on behalf of the DAWN2 Study Group

DAWN2: a multi-national, multi-stakeholder study and strong action platform to promote person-centred diabetes care 13

Mark Peyrot on behalf of the DAWN2 Study Group

DAWN2 study results clarify greater need for psychosocial support and self-management education

Norbert Hermanns and Frans Pouwer on behalf of the DAWN2 Study Group

h e a lt h c a r e d e l i v e r y DAWN2 study results on families: the hidden burden of diabetes 21

Katharina Kovacs Burns on behalf of the DAWN2 Study Group

DAWN2 study highlights importance of active involvement, engagement and education of people with diabetes

DAWN2 study results: provision of quality team-based and individualized diabetes care

Ingrid Willaing on behalf of the DAWN2 Study Group

Sanjay Kalra and Richard Holt on behalf of the DAWN2 Study Group

country perspectives DAWN2: from insights to action

Massimo Massi Benedetti, Ingrid Willaing, John Nolan, Katharina Kovacs Burns and Jo Groves

DAWN2 study results: a sample of country reports

DIABETES IN SOCIETY Discrimination and diabetes

Massimo Massi Benedetti

Diabetes voices: one condition, three perspectives

YLD: changing public attitudes and fighting for rights Elizabeth Snouffer and IDF Young Leaders in Diabetes

VOICE BO X

International Diabetes Federation Promoting diabetes care, prevention and a cure worldwide Diabetes Voice is published quarterly and is freely available online at www.diabetesvoice.org. This publication is also available in French and Spanish. The production of this Special Issue has been made possible thanks to the support of Novo Nordisk. Editor-in-Chief: Rhys Williams Managing Editor: Isabella Platon, diabetesvoice@idf.org Editor: Elizabeth Snouffer Editorial Assistant: Agnese Abolina Advisory group: Pablo Aschner (Colombia), Ruth Colagiuri (Australia), Maha Taysir Barakat (United Arab Emirates), Viswanathan Mohan (India), João Valente Nabais (Portugal), Kaushik Ramaiya (Tanzania), Carolyn Robertson (USA). Layout and printing: Ex Nihilo, Belgium, www.exnihilo.be All correspondence and advertising enquiries should be addressed to the Managing Editor: International Diabetes Federation, Chaussée de La Hulpe 166, 1170 Brussels, Belgium Phone: +32-2-538 55 11 – Fax: +32-2-538 51 14 © International Diabetes Federation, 2013 – All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means without the written prior permission of the International Diabetes Federation (IDF). Requests to reproduce or translate IDF publications should be addressed to the IDF Communications Unit, Chaussée de La Hulpe 166, B-1170 Brussels, by fax +32-2-5385114, or by e-mail at communications@idf.org. The information in this magazine is for information purposes only. IDF makes no representations or warranties about the accuracy and reliability of any content in the magazine. Any opinions expressed are those of their authors, and do not necessarily represent the views of IDF. IDF shall not be liable for any loss or damage in connection with your use of this magazine. Through this magazine, you may link to third-party websites, which are not under IDF’s control. The inclusion of such links does not imply a recommendation or an endorsement by IDF of any material, information, products and services advertised on third-party websites, and IDF disclaims any liability with regard to your access of such linked websites and use of any products or services advertised there. While some information in Diabetes Voice is about medical issues, it is not medical advice and should not be construed as such.

ISSN: 1437-4064 On the Cover: Lisa Hepner with her husband Guy Mossman and their family dog, Dylan. Lisa, who lives with type 1 diabetes, is producing a documentary about finding a cure for type 1 called ‘The Human Trial’ (www.thehumantrial.com). Photo : © Jose Element

December 2013 • Volume 58 • Special Issue 2

DiabetesVoice

Diabetes views

Breaking down barriers

harshly associated with diabetes are eradicated when the power of information, awareness and acceptance blend into one. The global challenge of diabetes requires a commitment to long-term solutions and immediate interventions in a variety of settings and cultures, but incongruous layers and a multitude of factors make change hard to achieve at the human level. We cannot allow this to become a deterrent. It is our task to translate research and study into actionable steps that will challenge the diabetes epidemic, especially in lowand middle-income countries and where urbanization is changing the fabric of daily life for millions of people.

Successful management of diabetes is a reflection of community

People living with type 1 or type 2 diabetes successfully may consider their ‘diabetes family’ to be a diverse set of individuals who are informed about their condition and care for them. The list is as long as it is varied: a spouse or partner; children and siblings; local doctors and nurses; social workers and pharmacists; teachers and classmates; friends and neighbours; colleagues and clients; and all the other individuals who make a difference in the lives of people with diabetes. DAWN2TM, a global initiative to assess and promote person-centred diabetes care, reasonably validates the disastrous effects of a high burden condition in communities where awareness and support are low, discrimination is high and care is suboptimal. The result? People with diabetes in these communities live in a world dominated by silent fear and denial until blindness or other major complications strike. The tipping point for the dramatic increase in the number of people who live with diabetes in the 21st century has already arrived, and diabetes associated mortality rates will continue to increase if affordable and equitable access to care, treatment and self-management education, regardless of race, ethnicity, gender and age, including access to psychosocial care and support, are not provided. One of the most significant barriers to progress is discrimination. The effect of discrimination felt by people living with diabetes and acknowledged by caregivers and families is real. Discrimination influences quality of life and clinical outcomes. The time to break down barriers of ignorance is now. Given that type 1 and type 2 diabetes are managed primarily in the home and workplace outside of a healthcare facility, it’s no surprise that families of people living with diabetes are impacted by a shared burden and distress. Notably DAWN2 broadened the scope of the original study to include family members, in addition to people with diabetes and healthcare professionals, and the findings require our attention. Nearly half of all people who live with diabetes in the world have high emotional distress related to their condition, and over one-third of family members of people with diabetes report a significant shared burden and feelings of helplessness. Improvements are desperately needed for patient care, education, psychosocial and community support but broadening the scale of resources to family members is an obvious factor. In an effort to help people embrace the principles of effective selfmanagement strategies, and empower them with information and confidence, IDF’s International Charter of Rights and Responsibilities of People with Diabetes stands up for people living with diabetes but also acknowledges the condition of acceptance. The stigma and discrimination so

DiabetesVoice

However, it would be an over-simplification to say that diabetes can be controlled and largely prevented if people living with the condition, their families and medical professionals would just take responsibility. The burden of diabetes challenges a wide range of public health, economic and medical science issues socially and geographically, and will continue to impact future generations if we don’t curb the epidemic. We must secure government commitments otherwise the consequences of diabetes will continue to cause death, disability and suffering. It is our task to push progress for action on diabetes prevention, treatment, rights and political leadership in line with the UN Political Declaration on Non-communicable Diseases signed in 2011 and Global Targets adopted in 2013. IDF’s Global Diabetes Scorecard will assist in tracking efforts and outcomes, but we must continue to drive obligation and duty versus voluntary government action. If IDF is going to help halt the rise in diabetes today, then we are obliged to pressure global and local health agendas now. The hype must be translated into real commitment and result in achievement. It is our sole mission. For only the second time in the 60-year history of our organisation, IDF is bringing the leaders of diabetes today together in the Western Pacific Region, where a third of the world’s population with diabetes live, over 132 million. Unsurprisingly, Melbourne has experienced the highest number of abstracts submitted for a World Diabetes Congress, in part due to the hard work of Paul Zimmet, Chair of the Scientific Programme Committee, together with the talented leads. I must also mention past IDF President Martin Silink who, with long-lasting effect, led the campaign for the UN Resolution on Diabetes in 2006. It is an honour to pay tribute to all our colleagues in Australia, especially to those who have worked with flair and diligence to achieve such an impressive and influential 2013 World Diabetes Congress. I hope you’ll join me in thanking them for their great hospitality.

Michael Hirst President, International Diabetes Federation

December 2013 • Volume 58 • Special Issue 2

Diabetes views

The many dimensions of DAWN2

I am extremely pleased that the fourth issue of Diabetes Voice this year is devoted to the DAWN2TM study. This second DAWN has built on and extended the work of the first (2001) DAWN by shedding more light on the attitudes, wishes and needs not only of people with diabetes and healthcare professionals but also of members of families in which diabetes is present.

In his editorial in the October 2008 Diabetes Voice issue devoted to the DAWN Youth study, Professor Martin Silink, then President of IDF, wrote ‘Diabetes imposes a heavy burden of care, leading not only to financial pressures, but also to stress and anxiety for all the family’. DAWN2 has significantly added to our knowledge of several facets of this family stress and anxiety. Information has been provided by over 2,000 family member respondents recruited from the 17 DAWN2 countries about: the burden they feel diabetes imposes on their lives; the distress caused by diabetes; the worry specifically related to the risk of their relative becoming hypoglycaemic; their frustration in not knowing ‘how best to help’ and the proportion participating in any diabetes educational programme or activities (just over 20% on average with highs for respondents based in Canada and Denmark (≈40%) and a low for those from the Russian Federation (≈10%)). This is complemented by important information provided, from these same 17 countries, by around 8,500 adults with diabetes (both type 1 and type 2) and just over 4,700 healthcare professionals responsible for the care of people with diabetes. Among the strengths of DAWN2 are the description of the many facets of diabetes from these several viewpoints, the fact that these descriptions have been constructed on the basis of well-validated research instruments – some ‘off the shelf ’ and some created specifically for this study – and the availability of potentially rich free-text qualitative data giving individuals’ views and experiences. The choice of methods in DAWN2 is a lesson in pragmatism. (For further details, see the first of the Diabetes Research and Clinical Practice articles listed a few pages further on in this Issue.) The people with diabetes and family members were recruited by a mixture of methods – ‘web, telephone and in-person’ while the healthcare professionals, similarly, were identified from a mixture of sources – ‘online panels and databases’ and ‘other sources such as telephone lists and physician directories’. The method by which responses were obtained was described as ‘hybrid’ – different in the countries regarded as having ‘high internet penetration’ from those considered not to have such high penetration. Whatever was likely to work seems to have been used. Methodological purists may well be uncomfortable with this heterogeneity of methods. An important question to be asked is: were these samples in any way representative of the totality of people with diabetes, family members and healthcare professionals in their countries? There really is no way of telling. Did the several methods of obtaining responses affect these responses in different ways? Again, there is no way of telling. The challenges and limitations of conducting such a study in this way are reasonably fully acknowledged in the three peer-reviewed papers that have already been placed in the public domain (and quoted in several articles in this Issue) and must be borne in mind when the results are assessed. Specifically mentioned in these

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published accounts is that we know nothing about the characteristics of any potential respondents that might have refused to take part.

Notwithstanding the above caveats, the DAWN2 results further emphasise how far we are away from eliminating or even significantly reducing the negative psychosocial effects of diabetes on individuals and on families. We are promised, in future publications, comparisons of the views of patients, family members and healthcare professionals about health services within countries. Discordance between these views is likely and will be particularly useful for illuminating ways in which these services can be improved. As mentioned above, as well as having responses to closed questions, DAWN2 has extensive free-text answers. Rigorous qualitative analysis for common themes (for which representative samples are not necessary) will be particularly useful. Finally, if there is to be a ‘DAWN3’ how can progress (or the lack of it) be assessed? To use the same mixed bag of sampling methods as DAWN2 just will not do. (DAWN3 samples for India, for example, may by chance have totally different characteristics from those of DAWN2 for the same country.) To re-contact the same individuals, in addition to recruiting further respondents, would be one theoretical solution. Better still would be to embed future data collection in routine health surveys, using the same or a similar set of instruments, and making use of truly representative samples of the populations of the same 17 countries (and others if at all possible). It would be a shame if the DAWN2 observations obtained with such effort were to be confined to just one moment in time. Readers may find some repetition in the articles in this issue. We have attempted to keep this to a minimum. Personally, I find this reassuring and view it as consistency and reinforcement rather than repetition.

Rhys Williams is Emeritus Professor of Clinical Epidemiology at Swansea University, UK, and Editor-in-Chief of Diabetes Voice.

DiabetesVoice

News in brief

World Diabetes Day 2013 – making a difference, one step at a time World Diabetes Day 2013 asked people from around the world to show their support for the 382 million living with diabetes today in the ‘Take a Step for Diabetes’ challenge through a variety of individual and group activities. A special online platform was developed to collect all steps submitted, ranging from a 30-minute physical activity to group awareness events involving hundreds of people. The aim of Take a Step was to showcase the unity of the diabetes community in tackling the challenges posed by the diabetes epidemic worldwide. The campaign, which culminated at the World Diabetes Congress in Melbourne, 2-6 December 2013, exceeded all expectations with thousands of activities submitted from all over the world. See how the world took a step at http://step.worlddiabetesday.org

featured a series of infographics explaining diabetes, its symptoms, signs, risk factors and complications, including an online resource section on the International Diabetes Federation website, providing diabetes-related information for different target groups. The global diabetes community continued to rally around the blue circle, the symbol for diabetes awareness, with hundreds of personalities including athletes, actors and decisionmakers, showing their support by wearing the blue circle pin.

Follow the campaign at http://www.worlddiabetesday.org

Momentum for World Diabetes Day 2013 began in March with the mobilisation of the global diabetes community around the campaign slogan – Diabetes: protect our future – and key messages highlighting important facts about the condition. New awareness materials were produced that

DIABETES INFOGRAPHIC #2

DWIA DIAB BET ETESNSES AR NI NG SIG WARNING SIGN S

frequent urination

weight loss

lack of energy

excessive thirst

If you show these signs, seek MEDICAL ATTENTION now. These signs can be mild or absen t in people with type 2 diabetes

www.worlddiabetesday.org

DiabetesVoice

December 2013 • Volume 58 • Special Issue 2

News in brief

IDF Diabetes Atlas 6th edition

New estimates suggest that every six seconds one person dies from diabetes and close to half of those deaths occur in people under the age of 60.

The 6th edition of the IDF Diabetes Atlas launched on World Diabetes Day provides updated estimates of the global burden of diabetes for 2013 and 2035. Most notably, the updated edition reports a staggering 382 million people in the world today live with type 1 diabetes or type 2 diabetes equivalent to 1 in 12 adults with diabetes worldwide. Almost half of these individuals have diabetes but do not know it. Global concerns that have exacerbated the diabetes epidemic include rapid development, urbanisation, and accompanying changes in lifestyle. Unless UN global targets and indicators are met, all of these factors will give rise to a figure of 592 million people living with diabetes by 2035. Currently, not one nation has solved the problem of diabetes and worldwide figures of prevalence and mortality continue to climb. New estimates suggest that every six seconds one person dies from diabetes and close to half of those deaths

December 2013 • Volume 58 • Special Issue 2

occur in people under the age of 60. Additionally, an increased prevalence of high blood glucose in pregnancy shows the far-reaching implications of the diabetes cycle and all categories – type 1 diabetes, type 2 diabetes, and gestational diabetes – are on the rise. The number of new studies added to the database for producing the 2013 and 2035 estimates demonstrate how the global threat of diabetes is stronger than ever. A concerted and coordinated effort must be made to stop the diabetes epidemic and push for greater advances in the evidence-base for diabetes epidemiology. The IDF Diabetes Atlas is available for download at: www.idf.org/ diabetesatlas

Diabetes in elderly people IDF recognises the high prevalence of diabetes in older people. Aging populations in many countries will contribute to increases in the prevalence of diabetes worldwide. The IDF Global Guideline for Managing Older People with Diabetes is a timely and much needed companion to clinical decision-making. Developed by a panel of experts in 2013, the Guideline provides up-todate evidence about caring for older people with diabetes. The Guideline addresses treatment decisions relevant to people 70 years and older and highlights the need to reduce risks and individualise care to promote safety and quality of life. Five categories of care are defined: that for the functionally independent, the functionally dependent, the frail, those with dementia, and those at the end of life. Each section in the Guideline includes a rationale for that sub-division, evidence based practice relevant to each category, clinical audit indicators and references.

DiabetesVoice

News in brief

Currently,

in Diabetes Research and Clinical Practice

DRCP is the official journal of IDF. The following articles have appeared recently or are about to appear in that journal. Access information can be found in the QR code. DIABETES ATTITUDES WISHES AND NEEDS 2

on the

Bookshelf

(DAWN2TM): A MULTINATIONAL, MULTI-STAKEHOLDER STUDY OF PSYCHOSOCIAL ISSUES IN DIABETES AND PERSON-CENTRED DIABETES CARE Peyrot M, Kovacs Burns K, Davies M, et al. Diabetes Res Clin Pract 2013; 99: 174-84. Provides details of the methods used in the DAWN2 study – the sampling of respondents (people with diabetes, family members of people with diabetes and healthcare professionals) in 17 countries and the research instruments used. TYPE 1 DIABETES AND LIVING WITHOUT A PARTNER: PSYCHOLOGICAL AND SOCIAL ASPECTS, SELF-MANAGEMENT BEHAVIOUR AND GLYCAEMIC CONTROL Joensen LE, Almdal TP, Willaing I. Diabetes Res Clin Pract (published online 29 July, 2013). ‘Cross-sectional survey of 2419 adult outpatients with type 1 diabetes from a specialized diabetes clinic in Denmark. … Social network and social support are related to important diabetes outcomes in type 1 diabetes. Living without a partner indicates a need for support to prevent poorer diabetes outcomes.’

DIABETES DO’S & HOW-TO’S

SMALL YET POWERFUL STEPS TO TAKE CHARGE, EAT RIGHT, GET FIT AND STAY POSITIVE By Riva Greenberg (Author), Gary Feit (Editor), Haidee Merritt (Illustrator) Illustrated, 296 pages, English, SPI Management LLC (January 3, 2013) Riva Greenberg, a diabetes-expert and certified health coach who has lived successfully with diabetes for 41 years, wrote this book for people who live with type 1 and type 2 diabetes for simple, clear information about what to do to take care of diabetes. With a team of top diabetes experts, Riva explores the latest recommendations, thinking and practical guidance. Illustrations by cartoonist and healthcare illustrator Haidee Merritt, who also lives with type 1 diabetes.

DIABETES AND WELLBEING: MANAGING THE PSYCHOLOGICAL AND EMOTIONAL CHALLENGES OF DIABETES, TYPES 1 and 2 [Unabridged] By Jen Nash (Author), Louise Jameson (Narrator) 232 pages, English, Wiley-Blackwell (April 29, 2013) Audiobook, 6 hours and 58 minutes, English, Audible Ltd (August 20, 2013) Diabetes and Wellbeing presents a range of research-based psychological

DIABETES IN THE MIDDLE EAST

principles that have been demonstrated to positively impact emotional well-

AND NORTH AFRICA

being. Dr. Jen Nash, a clinical psychologist who has lived with diabetes since

Zabetian A, Keli HM, Echouffo-Tcheugui JB, et al. Diabetes

childhood, guides the listener through strategies for better management of issues

Res Clin Pract 2013; 101: 106-22. ‘This review suggests the need for more representative surveillance data in this noteworthy focal point of the global diabetes epidemic. Such actions will not only help to understand the actual burden of diabetes but also motivate actions on design and implementation of diabetes prevention and control programmes.’

such as initial diagnosis, dealing with fears and anxiety and communicating with healthcare professionals.

PSYCHODIABETOLOGIE (German Edition) By Frank Petrak (Editor), Stephan Herpertz (Editor) 330 pages, German, Springer, 2013 edition (October 31, 2013) Psychodiabetologie provides well-informed and helpful advice on the psychological distress associated with diabetes. Author discussions include how a diagnosis of diabetes impacts children and their path of life; what can be done for ‘diabetes burnout’ or depression; and coping strategies for older patients who may face complications. Comprehensive online material is provided to support practitioners.

DiabetesVoice

December 2013 • Volume 58 • Special Issue 2

Asking, listening and responding

A decade of progress to implement the DAWN ‘Call to Action’ Martha Mitchell Funnell on behalf of the DAWN2 Study Group

The year 2001 was an exciting time in diabetes care and education for both healthcare professionals and people with diabetes. Not only were there innovations in the treatment of diabetes, but the results of the first Diabetes Attitudes, Wishes and Needs (DAWN) study were published. It is easy to forget just how revolutionary DAWN was for its time. It was international in scope and the largest and most comprehensive study, until that time, of the psychosocial realities of living with and caring for diabetes. But what made DAWN truly revolutionary was that it unequivocally demonstrated that diabetes management was more than blood glucose readings and medications. Diabetes care that focuses only on achieving medical targets, while ignoring the personal, health system and societal impact of diabetes is flawed and doomed to fail. Key findings of DAWN To summarize the key findings from DAWN, we learned:

December 2013 • Volume 58 • Special Issue 2

■ Diabetes self-management is often less than optimal. ■ Self-management problems are due in large part to psychosocial problems. ■ Diabetes-related distress is common and persistent, but rarely assessed or addressed. Healthcare professionals recognize that depression is also common, but few are referred for psychological care. ■ Access to team care and open communication between people with diabetes and healthcare professionals is associated with better outcomes. ■ Initiatives to address diabetes-related distress and other psychosocial issues must have a high priority to improve outcomes. Although many of these findings may seem self-evident, producing evidence to support how self-management behaviours are primarily influenced by psychosocial problems was particularly groundbreaking. Healthcare professionals

could no longer simply blame people with diabetes and label them as non-compliant and non-adherent. People with diabetes could no longer sit back and wait for healthcare professionals or healthcare ministries to ‘fix the problem’. We all had to come together and collaboratively develop a plan of action.

Healthcare professionals could no longer simply blame people with diabetes and label them as non-compliant and non-adherent. DAWN: a ‘Call to Action’ Five goals for improved diabetes care were identified as a result of those DAWN study findings. The relevance and importance of these were confirmed at a DAWN summit of key international stakeholders, including people with diabetes, healthcare

DiabetesVoice

Asking, listening and responding

Because there is a more complete understanding of the effect of distress on HbA1c results and other outcome measures, addressing psychosocial issues has become a part of ‘Standards of Diabetes Care’.

DiabetesVoice

December 2013 • Volume 58 • Special Issue 2

Asking, listening and responding

professionals, behavioural and psychosocial researchers, policy-makers, health ministers and payers. The DAWN ‘Call to Action’ identified that to improve the health and quality of life of people with diabetes we must: ■ Enhance communication between people with diabetes and healthcare professionals. ■ Promote improved communication and coordination between healthcare professionals. ■ Promote effective self-management skills for people living with diabetes. ■ Reduce barriers to effective therapy. ■ Improve psychological care for people with diabetes. There is no question that the DAWN ‘Call to Action’ presented a formidable challenge. Attempting to change diabetes care within one country and health system is extremely difficult; working to change diabetes care internationally could have been impossible without the vision, passion and commitment of the DAWN ‘Call to Action’ investigators and their efforts to create a better world for diabetes. Has the DAWN ‘Call to Action’ been successful? Change is always a gradual process, particularly widespread change involving many constituents, supporters and barriers. DAWN provided the impetus for change and the framework in which it could occur.

WALTER HILBERATH, Germany Walter has type 2 diabetes

December 2013 • Volume 58 • Special Issue 2

The first step in change is always the heightened awareness that a problem exists and recognition that the consequences of the problem are severe enough to warrant action. DAWN clearly provided new and important information that has influenced individuals with diabetes, healthcare professionals and policy-makers.

However, the ‘Call to Action’ goes beyond the power of individuals and requires larger and more systematic changes. Unfortunately, there is no one outcome or measure of success for DAWN. While change has occurred more slowly at the institutional level than it has for individuals, there are indicators of progress for diabetes care in the DAWN ‘Call to Action’: ■ There has been a great deal of research and progress in understanding and addressing the psychosocial aspects of diabetes. Diabetes-related distress has been the focus of much of this research. The burden of diabetes distress is now much better understood as a prevalent and pervasive issue. Because there is a more complete understanding of the effect of distress on HbA1c results and other outcome measures, addressing psychosocial issues has become a part of ‘Standards of Diabetes Care’ in many countries. While understanding emotional concerns used to be considered a ‘nice thing to do’ when providing medical care, there is growing recognition that to alleviate the growing global burden of diabetes, it is a necessity. ■ Standards of Diabetes Self-Management Education (DSME) in many countries and internationally have been revised to be more consistent with DAWN messages. There is less emphasis on the pancreas and what to do and more emphasis on the impact of diabetes on the lives of individuals and their families and on how to do what is needed to manage diabetes. Teaching coping strategies and behaviour change strategies such as self-directed goal setting are now recognized as essential components of DSME. ■ Standards for DSME now stress the importance of on-going Diabetes SelfManagement Support (DSMS) following DSME. The purpose of DSMS is to continue to address on-going and

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Asking, listening and responding

recurring psychosocial issues and sustain improvements in outcomes through providing emotional, behavioural or clinical resources and support. People living with diabetes need the opportunity to receive the information, support and quality care they need throughout their lives.

People with diabetes are being successfully trained throughout the world to serve as ‘peer supporters’ for others with diabetes to meet this growing need. ■ Another change has been the involvement of more people with diabetes in providing on-going support. The growing number of people with diabetes means that there are simply not enough diabetes educators and other healthcare professionals to meet the demand. People with diabetes are being successfully trained in many places throughout the world to serve as ‘peer supporters’ for others with diabetes to meet this growing need. ■ Driven by the rapidly growing burden of diabetes on healthcare systems and health ministries, diabetes care delivery is being examined and revised throughout the world. In an effort to improve care and lower costs, there is a strong emphasis on creating person-centred care. This approach includes strategies to actively engage people with diabetes in their care and prompt a more collaborative relationship between healthcare providers and people with diabetes to promote shared decision-making. This systems-based approach also includes electronic medical records to enhance communication between healthcare professionals and their

DiabetesVoice

JAGRUTI PANDYA, USA – Jagruti has type 2 diabetes

patients. Person-centred care, particularly in the context of a ‘clinical home’ provides a framework for the increased communication recommended in the ‘Call to Action’. Where do we go from here? The DAWN ‘Call to Action’ sent a strong message that addressing the psychosocial and behavioural needs of people with diabetes is an essential component of diabetes care. There has been progress by both individual practitioners and healthcare systems. However, the results of DAWN2TM make it very clear that there is still a great deal of work to do, in spite of all of the therapeutic and technological advances of the past 10 years. Communication among healthcare professionals and with those in their care continues to be a significant issue. Access to DSME and DSMS is limited and people with diabetes and their family members are still experiencing high levels of distress. We have come far in a relatively short period of time,

but DAWN2 challenges us to renew our commitment and our passion to ease the burden for all who are affected by diabetes throughout the world.

Martha Mitchell Funnell Martha Mitchell Funnell is Associate Research Scientist, Department of Medical Education, Michigan Center for Diabetes Translational Research, University of Michigan Medical School, Ann Arbor, Michigan, USA.

December 2013 • Volume 58 • Special Issue 2

Asking, listening and responding

DAWN2: a multi-national, multi-stakeholder study and strong action platform to promote personcentred diabetes care Mark Peyrot on behalf of the DAWN2 Study Group

The first Diabetes Attitudes, Wishes and Needs (DAWN) study revealed that diabetes care and self-management were considered inadequate by people with diabetes and healthcare professionals. Diabetes-related psychological distress was common and found to be a cause of impaired self-management, but few people with diabetes received psychological treatment.1 Although treatment of emotional problems in people with diabetes was low, healthcare providers desired a better understanding of such issues.2 Collaborative diabetes care was identified as a key strategy for improving diabetes outcomes, but interdisciplinary team care was not widely available.2 Following the 2001 DAWN study, patient advocates and diabetes care experts met to strategize about how the study findings could inform efforts to improve diabetes care.3 This process generated the DAWN ‘Call to Action’4 that encouraged multiple stakeholders (people with diabetes and their family members, healthcare providers, payers, policy-makers, non-government organizations) to implement person-centred diabetes care with support from an interdisciplinary team of healthcare providers.2 The ‘Call to Action’ identified strategic areas for

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the improvement of diabetes care by focusing on the psychosocial issues involved in living with diabetes.3,4 Strategies for improving diabetes care processes and outcomes, as guided by the findings of the DAWN study, included: raising awareness of the psychosocial issues involved in living with diabetes,1 empowerment of people with diabetes through Diabetes SelfManagement Education (DSME),2 training healthcare providers in person-centred diabetes care,3 development of innovative tools to deliver psychosocial support to people with diabetes,4 and improvement of guidelines and policies for person-centred diabetes care.5

Despite major advances in diabetes care the growing global burden of diabetes calls for continued improvement. Thus, it is time for a new DAWN. It has been a decade since the DAWN study highlighted the need for collaborative action to improve self-management and psychosocial support. Despite major advances in diabetes

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Asking, listening and responding

Figure 1. Questionnaire topics. Health/quality of life (people with diabetes and family members)

Diabetes profile

Active self-management

Attitudes and beliefs about diabetes

Diabetes training

Care and support/ involvement

Future needs

Diabetes education and information

Source : Peyrot M, et al. Diabetes Res Clin Pract 2013; 99: 174-84.

care the growing global burden of diabetes calls for continued improvement. Thus, it is time for a new DAWN. Study rational and objectives The DAWN2TM study and action platform builds upon the foundation of the original DAWN study. It aims to improve our understanding of the unmet needs of people with diabetes and their family members and healthcare providers and facilitate dialogue and collaboration among all key stakeholders. The study investigates the level of implementation of person-centred diabetes care that incorporates chronic care strategies, including self-management education and psychosocial support.5,6 The primary objective of the DAWN2 study7 is to assess potential barriers to and facilitators of active and successful management of diabetes among three key stakeholder groups: people with diabetes, their family members and healthcare providers. Secondary objectives are: ■ To establish national benchmarks for health status, quality of life, access to self-management education, and to selfcare in diabetes. ■ To assess the access to, and use and benefit of, support from healthcare teams, family and friends, communities and society.

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(healthcare professionals)

■ To explore and pinpoint the most important facilitators and barriers to person-centred chronic care for each stakeholder group. ■ To identify successes, wishes, needs, preferences and priorities for change among all key stakeholders in diabetes.

Study methodology The methodology of the DAWN2 study has been deDemographic scribed in detail elsewhere.7 and practice The primary component characteristics is a set of cross-sectional national surveys conducted in 17 countries across four continents: Algeria, Canada, China, Denmark, France, Germany, India, Italy, Japan, Mexico, the Netherlands, Poland, Russian Federation, Spain, Turkey, the UK and the USA. Separate surveys were conducted for each of the three stakeholder groups. A variety of sampling frames and recruiting methods were used to obtain diverse samples and reduce method-based bias. Parallel samples were drawn in each participating country. The final study population consisted of 15,438 participants, including 8,596 adults with diabetes, 2,057 adult family members of adults with diabetes and 4,785 providers of adult diabetes care.8,9,10

The final study population consisted of 15,438 participants, including 8,596 adults with diabetes, 2,057 adult family members of adults with diabetes and 4,785 providers of adult diabetes care. A summary of the main topics covered by the study questionnaires is presented in Figure 1. The questionnaires incorporate several components, including: items from the original DAWN study (to permit assessment of trends over the past decade); newly developed questions (to investigate areas such as discrimination and the needs and preferences for better education and support); and open-ended questions

December 2013 • Volume 58 • Special Issue 2

Asking, listening and responding

(to capture the individual narratives of respondents). Some of the new questions were developed, adapted or modified with inspiration from existing validated instruments, and several standardized instruments were also incorporated into the questionnaires. The questionnaires were designed to permit comparison across stakeholder groups where possible. Questionnaires were administered over the Internet, by telephone and in-person using the native languages of the participating countries. The DAWN2 surveys were designed to provide evidencebased guidance for all diabetes stakeholders regarding existing levels of quality of life and quality of care and how these can be improved at the local, national and international levels. Key research topics included: ■ Comparison of participating countries in terms of healthcare processes and outcomes. ■ Changes in healthcare processes and outcomes during the period between DAWN and DAWN2.

■ Levels and determinants of quality of life, psychosocial adaptation, and self-management behaviour among people with diabetes, including their own beliefs and characteristics as well as interpersonal, organizational, community, and societal contexts. ■ Levels and determinants of family member burden of diabetes and support for people with diabetes, especially particular forms of support associated with diabetes outcomes. ■ Levels and determinants of healthcare provider delivery of person-centred diabetes care and support, especially those associated with diabetes outcomes, e.g., DSME. ■ Differences versus similarities between the beliefs, behaviours and roles of primary care physicians, diabetes specialists, nurses, and dieticians. ■ Events that created turning points in how people live with and manage diabetes; perceptions of unmet needs and the individual, community and societal changes required by stakeholders.

Figure 2. A new needs model for diabetes.

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. Community: Medical care and treatment: Access to quality diagnosis, treatment, care, and information. Work/school: 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, change, and be supportive of my condition.

Source: The DAWN™ needs model 2011. DAWN Study 2001; DAWN Youth Study 2008; DAWN2 Dialogue Events 2011.

December 2013 • Volume 58 • Special Issue 2

DiabetesVoice 15

Asking, listening and responding

Conclusions The DAWN2 study and action platform, undertaken by Novo Nordisk in partnership with the International Diabetes Federation (IDF), the International Alliance of Patients’ Organizations (IAPO), the Steno Diabetes Center, and a number of other national, regional and global partners, is designed to support a paradigm shift from an acute care model to a person-centred, integrated chronic care model, such as the WHO Innovative Care for Chronic Conditions framework.11 Optimal diabetes care is best achieved by collaboration between people with diabetes, their family members and healthcare teams that are adequately resourced and motivated to work together. Effective collaboration is influenced by other stakeholders, including healthcare organizations, communities, and societal policy-makers (see Figure 2 on page 15). Research-based evidence provides the foundation for optimizing diabetes care strategies, but the perspective of people with diabetes is important in informing all aspects of diabetes care.12 People with diabetes have the right to be informed and educated about diabetes, to have access to proper diabetes care, and to be full participants in society without discrimination because of their condition.13

Research-based evidence provides the foundation for optimizing diabetes care strategies, but the perspective of people with diabetes is important in informing all aspects of diabetes care. DAWN2 builds upon a decade of efforts to improve personcentred diabetes care. The DAWN2 study and action platform should enhance opportunities for improving diabetes self-management and care processes by identifying the critical drivers of active self-management and person-centred diabetes care. It is the hope of those involved in DAWN2 that the study findings will facilitate the development and implementation of innovative and effective strategies by all stakeholders to improve psychosocial and health outcomes among those living with diabetes.

All national study results presented in this publication are adjusted for clustering at country level to facilitate cross-country comparison. Survey results from people with diabetes are furthermore weighted according to age, gender and education to best possibly reflect the population in the given country.

DiabetesVoice

Mark Peyrot Mark Peyrot is Professor of Sociology at Loyola University, Maryland, USA and serves on the research faculty in the School of Medicine at Johns Hopkins University.

References 1. Peyrot M, Rubin RR, Lauritzen T, et al. Psychosocial problems and barriers to improved diabetes management: results of the cross-national Diabetes Attitudes, Wishes and Needs (DAWN) study. Diabet Med 2005; 22: 1379-85. 2. Skovlund SE, Peyrot M, DAWN International Advisory Panel. The Diabetes Attitudes, Wishes and Needs (DAWN) program: a new approach to improving outcomes in diabetes care. Diabetes Spectrum 2005; 18: 136-42. 3. 2 nd International DAWN Summit: a call-to-action to improve psychosocial care for people with diabetes. Practical Diabetes Int 2004; 21: 201-8. 4. I nternational Diabetes Federation. Putting people at the centre of care: DAWN in action. Diabetes Voice 2004; 49 (Special Issue): 1-49. 5. S iminerio LM, Drab SR, Gabbay RA, et al. Diabetes educators: implementing the chronic care model. Diabetes Educ 2008; 34: 451-6. 6. International Diabetes Federation Clinical Guidelines Task Force. Global Guideline for Type 2 Diabetes. IDF. Brussels, 2005. 7. Peyrot M, Burns KK, Davies M, et al. Diabetes Attitudes, Wishes and Needs 2 (DAWN2™): a multinational, multi-stakeholder study of psychosocial issues in diabetes and person-centred diabetes care. Diabetes Res Clin Pract 2013; 99: 174-84. 8. Nicolucci A, Kovacs Burns K, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013; 30: 767-77. 9. Kovacs Burns K, Nicolucci A, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking indicators for family members living with people with diabetes. Diabet Med 2013; 30: 778-88. 10. Holt RIG, Nicolucci A, Kovacs Burns K, et al. Second Diabetes Attitudes, Wishes and Needs (DAWN2™) study: cross-national comparisons on barriers and resources for optimal care – healthcare professional perspective. Diabet Med 2013; 30: 789-98. 11. World Health Organization. Innovative care for chronic conditions: Building blocks for action. WHO. Geneva, 2002. http://www.who.int/diabetesactiononline/about/icccreport/en/ 12. Knottnerus JA, Tugwell P. The patients’ perspective is key, also in research. J Clin Epidemiol 2012; 65: 581-3. 13. International Diabetes Federation. International Charter of Rights and Responsibilities of People with Diabetes. IDF. Brussels, 2011.

December 2013 • Volume 58 • Special Issue 2

Asking, listening and responding

DAWN2 study results clarify greater need for psychosocial support and self-management education Norbert Hermanns and Frans Pouwer on behalf of the DAWN2 Study Group

CAMERON HUBBARD, USA – Cameron has type 1 diabetes

The DAWN2TM study is an international investigation, initiated by Novo Nordisk and conducted in collaboration with International Diabetes Federation (IDF), the International Alliance of Patients’ Organizations (IAPO) and the Steno Diabetes Center. The main objectives of DAWN2 include providing a better understanding and awareness of the potential impact that diabetes can have on the quality of life of people with diabetes and their family members. Further, the views of healthcare professionals on diabetes care and their insights for improvement of care delivery are explored.1

December 2013 • Volume 58 • Special Issue 2

In each of the 17 countries, 500 people with diabetes were asked to participate in this study. Likewise, 120 family members and 280 healthcare professionals were invited for study participation. Thus, in total more than 15,000 people living with diabetes took part in the DAWN2 study. The first results of this large study based on three key stakeholder populations – people with diabetes,2 family members,3 and healthcare professionals4 – were recently published. Diabetes often has a negative impact on many aspects of the daily lives of people with diabetes: more than half of people

with diabetes reported a negative impact of living with diabetes on physical health and approximately half reported a negative impact on emotional well-being. One in seven people with diabetes had such a low emotional well-being score that depression is likely. Nearly half of the people with diabetes reported an elevated level of diabetes-specific emotional distress. Correlates of reduced well-being and elevated diabetes-related distress may be the negative impact of diabetes on various aspects of the daily lives of people with diabetes. For example, worries

DiabetesVoice 17

Asking, listening and responding

about hypoglycaemia were very common. More than half of people with diabetes (56%) felt very worried about the risk of hypoglycaemia. Moreover, 39% of people with diabetes reported that taking medication interferes with their ability to live a normal life.

People with diabetes also reported that diabetes had a negative impact on the relationship with family, friends and peers, leisure activities, on work/studies and on their financial situation.

PEOPLE WITH DIABETES REPORT MANY ASPECTS OF DAILY LIFE ARE NEGATIVELY IMPACTED BY THEIR CONDITION:

62% PHYSICAL HEALTH

46%

People with diabetes also reported that diabetes had a negative impact on the relationship with family, friends and peers (21%), leisure activities (38%), on work/ studies (35%) and on their financial situation (44%). Discrimination because of diabetes and lack of support from communities was reported in 19%. Moreover, only a minority (28%) of people with diabetes reported that they did receive support, education or information from community resources. Although there were some differences in discrimination between participating countries, discrimination because of diabetes and lack of community support was an important issue in all surveyed countries.

Importantly, despite the burden of living with diabetes, 28% also reported a positive impact of diabetes on at least one aspect of their life. For example, respondents reported that they felt supported by

DiabetesVoice

39%

MEDICATION INTERFERENCE

APROM ID#: 5592. Date of approval: September – 2013

There were some positive aspects of having to live with diabetes.

44%

EMOTIONAL WELLBEING

FINANCES

38% LEISURE ACTIVITIES

35%

WORK AND STUDIES

REDUCING THE BURDEN OF DIABETES CAN GREATLY IMPROVE DAY-TO-DAY QUALITY OF LIFE FOR PEOPLE WITH DIABETES. WE CAN ALL ACT TO INCREASE SUPPORT BEYOND MEDICATION ALONE

For more information on building supportive communities for people with diabetes, visit www.dawnstudy.com

December 2013 • Volume 58 • Special Issue 2

Asking, listening and responding

The DAWN2 results indicate that diabetes has a wide ranging impact on the lives of family members. others and experienced strengthened relationships with family members. Yet, the negative impact of diabetes on quality of life is not only restricted to people with diabetes. The DAWN2 results indicate that diabetes has a wideranging impact on the lives of family members, too. The proportion of family members reporting a major negative impact of diabetes on certain quality of life aspects is highly comparable to people with diabetes (see also article by Kovacs Burns in this Issue). A relatively high proportion of family members expressed a need to be more involved in the care of the person with diabetes, but many family members reported that they felt frustrated, as they did not know how to offer sufficient support. In summary, the DAWN2 study clearly demonstrated that diabetes is often experienced as a major psychosocial burden, not only by people with diabetes but also by their family members.

how diabetes affects their lives, only 24% of people with diabetes reported that they were being asked about this by their healthcare professionals. On the other hand, most healthcare professionals (63%) agreed that there is a major need for a better availability of resources for the provision of psychosocial support and 59% of the healthcare professionals responded that they would like to receive more training in addressing psychosocial needs of people with diabetes. Only 20% of professionals reported that they had already received training in the management of psychological aspects of diabetes. Many healthcare professionals (33%) also recognised that discrimination because of diabetes was a problem in their

country, because they expressed a need for major improvements in accepting people with diabetes as equal members of the society. In summary, the DAWN2 study highlighted how healthcare professionals perceive a lack of resources to address emotional problems in people with diabetes and acknowledge a need for better training to help provide more adequate psychosocial support.

Most healthcare professionals agreed that there is a major need for a better availability of resources for the provision of psychosocial support. The vast majority (81%) of people with diabetes regarded the diabetes education programmes that they had attended as helpful. However, only 49% were participating in any such programmes. In family members of people with diabetes

ZUAL GÖZÜTOK, Turkey Zual has type 2 diabetes

Most people with diabetes received regular clinical assessments like HbA1c measurements (72%), but remarkably fewer of them (32%) reported that they were asked, in the past 12 months, by members of their healthcare team, about being anxious or depressed. However, healthcare professionals and people with diabetes differed considerably with regard to their perceptions about addressing psychosocial aspects in regular diabetes care. Whereas 52% of healthcare professionals reported that they asked people with diabetes on a regular basis

December 2013 • Volume 58 • Special Issue 2

DiabetesVoice 19

Asking, listening and responding

the gap was even greater. Approximately three-quarters of family members found diabetes education programmes helpful to learn more about diabetes and to provide better support for their relatives. Here too, only 23% participated in any diabetes educational programmes.

Only 23% [of family members of people with diabetes] participated in any diabetes educational programmes or activities. Many (>90%) of the healthcare professionals who responded identified a need for improvement in self-management by people with diabetes, especially in lifestyle changes and better self-monitoring of blood glucose (>60%). For healthcare professionals, the same discrepancy of finding diabetes education helpful and actual participation and training was

evident (see Figure). Most healthcare professionals (61%) were convinced that a better availability of Diabetes Self-Management Education (DSME) would reduce diabetes burden, but only 34% reported to have received adequate training for providing self-management education. Furthermore, the majority of healthcare professionals (60%) described a need for major improvements in the availability of DSME. Half of the healthcare professionals would like to attend training programmes to acquire knowledge and tools for a more effective self-management education. In summary, DSME was experienced as helpful by people with diabetes, family members as well as by healthcare professionals. All three groups identified a major need for a better availability of DSME. The first DAWN study, ten years ago, reported that diabetes was often associated with psychosocial problems and

Figure. Proportion of healthcare professionals reporting that healthcare in their country is well organized for the management of chronic conditions, including diabetes.4 100

Proportion of healthcare professionals, %

90 80

60 50 40

Norbert Hermanns is Head of the Research Institute of the Diabetes Academy Mergentheim (FIDAM), Bad Mergentheim, Germany. Frans Pouwer is Professor at the Department of Medical and Clinical Psychology, CoRPS, Tilburg University, Tilburg, the Netherlands.

References 1. Peyrot M, Burns KK, Davies M, et al. Diabetes Attitudes, Wishes and Needs 2 (DAWN2™): a multinational, multi-stakeholder study of psychosocial issues in diabetes and person-centred diabetes care. Diabetes Res Clin Pract 2013; 99: 174-84.

3. K ovacs Burns K, Nicolucci A, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking indicators for family members living with people with diabetes. Diabet Med 2013; 30: 778-88.

30 20

Algeria

Turkey

Poland

Mexico

Spain

United Kingdom

China

India

Russian Federation

Canada

Italy

Germany

Denmark

United States

France

Netherlands

Japan

DiabetesVoice

Norbert Hermanns and Frans Pouwer

2. Nicolucci A, Kovacs Burns K, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013; 30: 767-77.

poor well-being in many people with diabetes. It was also shown that healthcare systems were poorly equipped to support people with diabetes adequately. DAWN2 extended its scope to include family members. Results of DAWN2 still indicate that diabetes represents a major psychosocial burden to people and also for their families. Healthcare professionals identified major needs to better address emotional problems associated with diabetes in people with the condition and their families. Self-management education was congruently seen as an important tool to meet challenges of living a healthy and productive life with diabetes by people with diabetes, their families and healthcare professionals.

4. H olt RIG, Nicolucci A, Kovacs Burns K, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national comparisons on barriers and resources for optimal care – healthcare professional perspective. Diabet Med 2013; 30: 789-98.

December 2013 • Volume 58 • Special Issue 2

Healthcare delivery

DAWN2 study results on families: the hidden burden of diabetes Katharina Kovacs Burns on behalf of the DAWN2 Study Group

Previous studies have shown that people with diabetes experience more distress, worry, fear and negative quality of life than those without diabetes.1 Their families have similar experiences. For this reason, diabetes has been referred to as a ‘family affair’.2 How the family communicates around living with diabetes can influence diabetes management outcomes. It is, therefore, important to consider the positive and negative aspects of managing diabetes, the support provided by the family and needed by the person with diabetes, and the relationship this has with successful diabetes self-management. It is also important to consider what support families need to appropriately manage their burden, so they are able and pre-

pared to support their family member living with diabetes.2 The original Diabetes Attitudes, Wishes and Needs (DAWN) study in 2001 involved people with diabetes and healthcare professionals from 13 countries, but did not include family members. This first DAWN study clearly identified the challenges associated with managing diabetes: that diabetes management was ‘poor’ and coordinated diabetes care was lacking.1 This prompted a ‘Call to Action’ for improved coordination of person-centred diabetes care and collaboration among people with diabetes, their family members, healthcare professionals, and other stakeholders.3

Diabetes has been referred to as a ‘family affair’.

December 2013 • Volume 58 • Special Issue 2

Ten years later, the DAWN2TM study was initiated to check on progress. One significant addition to DAWN2 was the inclusion of family members.4 An objective of the study was to determine the psychosocial and educational needs of family members. These findings are to help drive discussion and collaboration among all key stakeholders to strengthen active patient and family engagement in diabetes care and selfmanagement, as well as to inform better practices and policies.5 DAWN2 results: family affairs The DAWN2 family member survey results5 reveal that about one-third of family members reported experiencing a notable burden and negative impact of diabetes. In addition, they reported having high levels of distress (40%) and being worried about the risk of hypoglycaemic events occurring in the person with diabetes (61%). In contrast, they also experienced some positive impacts. For example, 35% of family members reported a positive impact on

DiabetesVoice 21

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and people with diabetes Figure: Responses of family members regarding diabetes impact and effects.

Discrimination Negative impact on emotional well-being people with diabetes family members

Negative impact on work/studies Negative impact on leisure activities Negative impact on relationships Negative impact on finances Negative Impact on physical health Positive impact of diabetes Worried about hypoglyaemic events High diabetes distress Likely depression Good/very good quality of life 0

at least one life dimension, specifically ‘relationship with family, friends and peers’, ‘relationship with the person who has diabetes’ and ‘work or studies’. More negative impacts were ‘emotional well-being’ (45%), ‘financial situation’ (35%), ‘leisure activities’ (31%) and ‘physical health’ (27%). Regardless of these, 51% of family members said that their quality of life was ‘good’/‘very good’ versus 8% who said the opposite. The remainder had ‘neither poor nor good’ quality of life. One other factor impacting on the quality of life, was discrimination. Almost one-quarter of family members felt that people with diabetes were discriminated against –

DiabetesVoice

Respondents (%)

this has hidden consequences for the entire family.2

Families do not want to ‘police’ lifestyle habits, but desire more involvement in the care of the person with diabetes. People with diabetes presented many similar responses to their family members.6 Small differences were found in higher distress levels in people with diabetes compared to family members. Greater differences were found in a

few of the life dimensions, particularly physical health. The Figure shows these comparisons in responses between family members and people with diabetes recruited from the same countries. Conflicts between family members and people with diabetes they live with can arise out of these types of claims. This includes families not wanting to ‘police’ lifestyle habits, but desiring more involvement in the care of the person with diabetes. Although 37% of family members said they were frustrated that

December 2013 • Volume 58 • Special Issue 2

healthcare delivery

VERÓNICA RUBIO FRANCO and her daughter and son, Mexico – Verónica had gestational diabetes and now has type 2 diabetes

they did not know how best to help the person with diabetes they lived with, an equal number indicated they would like to be more involved in helping. Specifically, they wanted to help the person with diabetes deal with his or her feelings regarding diabetes and living with it. Family members’ support was positively acknowledged by 88% of people with diabetes. These findings suggest more relevant education or support is needed to inform and prepare family members in

December 2013 • Volume 58 • Special Issue 2

their support role of family members with diabetes. Surprisingly, diabetes education sessions were not a favourite of family members, as less than one in four had participated. Of those that had participated, 72% found the sessions ‘somewhat’ or ‘very’ helpful. It appeared that the majority of family members (81%) relied more on other sources of education, information or support to prepare them in their caregiver role. Messages and opportunities The DAWN2 study progressed in its

‘Call to Action’ by asking families about their perceptions and experiences regarding their overall burden with diabetes, distress, worry, and positive and negative impacts on their ‘quality of life’. With 35% or more of families selfreporting their burdens and negative impacts as a result of their caring for a person with diabetes, one wonders how much is unreported and ‘hidden’. Families need support to address their burden, particularly since studies have shown that family caregivers whose quality of life is high, are able to more

DiabetesVoice 23

Healthcare Delivery

THE FAMILIES OF PEOPLE WITH DIABETES ARE ALSO AFFECTED BY THE CONDITION:

40% OF FAMILY MEMBERS REPORTED A HIGH LEVEL OF DIABETES-RELATED DISTRESS

61% ARE WORRIED ABOUT THE RISK OF HYPOGLYCAEMIC EVENTS OCCURRING IN THEIR LOVED ONE

37%

OF FAMILY MEMBERS ARE FRUSTRATED THAT THEY DON’T KNOW HOW BEST TO PROVIDE HELP

39%

INDICATED THEY WOULD LIKE TO BE MORE INVOLVED IN THEIR CARE

MOST HEALTHCARE PROFESSIONALS AGREE THAT FAMILY INVOLVEMENT IS VITAL TO GOOD DIABETES CARE

APROM ID#: 5591. Date of approval: September – 2013

TO HELP PEOPLE WITH DIABETES, WE MUST ALSO HELP THEIR FAMILY MEMBERS. PSYCHOSOCIAL SUPPORT AND EDUCATION FOR FAMILIES CAN IMPROVE OUTCOMES FOR THE PERSON WITH DIABETES... AND THE FAMILY TOO

For more information on building supportive communities for people with diabetes, visit www.dawnstudy.com

DiabetesVoice

successfully support the person with diabetes they live with to improve their diabetes management outcomes.2 This focus on families and supporting their psychosocial and educational needs is a key recommendation of DAWN2.

Katharina Kovacs Burns Katharina Kovacs Burns is Director, Interdisciplinary Health Research Academy and Associate Director, Health Sciences Council, Edmonton Clinic Health Academy, University of Alberta, Edmonton, Alberta, Canada. She is also a representative of the International Alliance of Patients’ Organizations on the DAWN2 Study Group.

Diabetes is a known burden for people living with diabetes, but it is a ‘hidden’ burden for their families. Regardless of the burden of diabetes on family members, it is noteworthy that almost half indicated their desire to be more involved in the care and support for person with diabetes they live with. This enthusiasm is a useful finding for local diabetes associations and healthcare programmes to use in planning and investing in community-based support, resources and educational opportunities for families living with diabetes. This snapshot from the DAWN2 study revealed some significant messages: ■ Diabetes is a known burden for people living with diabetes, but it is a ‘hidden’ burden for their families. ■ Family support to people with diabetes is important and valued for the difference it can make to diabetes self-management outcomes. ■ Families need psychosocial and educational resources to self-manage and support the person with diabetes with whom they live. Going forward from DAWN2, various country and global initiatives must consider a ‘Call to Action’ to support families and people with diabetes to effectively self-manage.

References 1. Peyrot M, Rubin RR, Lauritzen T, et al. Psychosocial problems and barriers to improved diabetes management: results of the crossnational Diabetes Attitudes, Wishes and Needs (DAWN) study. Diabet Med 2005; 22:1379-85. 2. Rintala TM, Jaatinen P, Paavilainen E, et al. Interrelation between adult persons with diabetes and their family: a systematic review of the literature. Journal of Family Nursing 2013; 19: 3-28. 3. I nternational Diabetes Federation (IDF). Putting people at the centre of care: DAWN in action. Diabetes Voice 2004; 49 (Special Issue): 1-49. 4. P eyrot M, Burns KK, Davies M, et al. Diabetes Attitudes, Wishes and Needs 2 (DAWN2™): a multinational, multi-stakeholder study of psychosocial issues in diabetes and person-centred diabetes care. Diabetes Res Clin Pract 2013; 99: 174-84. 5. Kovacs Burns K, Nicolucci A, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking indicators for family members living with people with diabetes. Diabet Med 2013; 30: 778-88. 6. N icolucci A, Kovacs Burns K, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013; 30:767-77.

December 2013 • Volume 58 • Special Issue 2

healthcare delivery

DAWN2 study highlights importance of active involvement, engagement and education of people with diabetes Ingrid Willaing on behalf of the DAWN2 Study Group

Self-management support and diabetes education is essential for people with diabetes to actively engage in effective diabetes self-management. People with diabetes who feel capable of self-managing their diabetes have the opportunity to live better lives with diabetes, get more support and to better utilize the healthcare system.

ments in access to self-management support and diabetes education with the purpose of helping people with diabetes achieve the best quality of life possible.

In line with this observation, the DAWN2TM study suggests that diabetes education plays a vital role in improving diabetes outcomes and quality of life for people with diabetes. However, the results also indicate that individual participation in diabetes education varies widely as reported by people with diabetes in the different DAWN2 countries (23%-83%).

Low level of active self-management engagement in people with diabetes The study indicates a low level of active engagement of people with diabetes in their own care. Following self-care advice for medication and diet was most common (6 days of the last 7 days for medication and 5 days out of 7 for diet) whereas it was least common to follow advice for glucose monitoring, physical activity and foot examination (approximately half of the time during the last 7 days). The vast majority of people with

The results of the DAWN2 study have the potential to lead the way for improve-

December 2013 â&#x20AC;˘ Volume 58 â&#x20AC;˘ Special Issue 2

Four key DAWN2 study findings expose the most critical issues in relation to the role of active involvement in diabetes care and education today.

diabetes reported taking their medication as agreed with the healthcare team, but country variations were significant.1 People with diabetes who felt involved in their care seem to have enhanced healthy eating, did more exercise, selfmonitored blood glucose more often and checked their feet more often compared to that reported by people who did not feel involved in their care.

A little more than a third of people with diabetes felt empowered (capable of self-managing) in relation to their diabetes care. Just a little more than a third (36%) of people with diabetes felt empowered

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ANA MIRIAM MÉNDEZ VALDEZ, Mexico – Ana has type 1 diabetes

(capable of self-managing) in relation to their diabetes care. This percentage is not impressive, considering how the personal burden of living with diabetes can be decreased when the individual feels empowered to take control.1

problems due to their diabetes compared to people who received less support. A high degree of perceived support from

The availability of person-centred care and support for active involvement was rated as low by people with diabetes; however, there was wide variation across countries. A little more than half of people with diabetes reported receiving support for self-management from their family, friends, colleagues, the community or the healthcare team (57%; country variation 39%-77%).1

family, friends, colleagues, healthcare team and other people in the community was also linked to a high degree of diabetes empowerment, well-being and perceived involvement in diabetes care as compared to people who did not receive support. This relationship between fewer psychosocial problems and empowerment tells us how important support is in facilitating a better life with diabetes.

People who experienced a high degree of support reported fewer psychosocial

Across all countries surveyed, many people with diabetes (86%) found their

healthcare teams supportive, although only 47% considered their care well organized. People with diabetes also reported varying levels of assessment and involvement by healthcare professionals. One discouraging feature of the study results shows significant differences in perceptions of care between people with diabetes1 and healthcare teams in their countries.2

Healthcare teams are considered supportive but care is often not well organized.

DiabetesVoice

Many healthcare professionals reported that they provided person-centred care and a high level of practical or communicative support during regular clinic visits. However, while 52% of healthcare professionals reported that they ask their patients on a regular basis how diabetes impacts their lives,2 only 24% of people with diabetes reported that they had been asked about this.1

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healthcare delivery

December 2013 • Volume 58 • Special Issue 2

Summary and conclusions The DAWN2 study findings confirm that it is more likely for people with diabetes to have better well-being and to perform more health-promoting diabetes behaviours if they: ■ Are actively involved in their diabetes care. ■ Receive support for self-management. ■ Feel capable of managing their diabetes care.

100%

80%

60%

40%

20%

Canada

Germany

Poland

Japan

Denmark

United States

United Kingdom

Netherlands

Spain

Italy

China

France

0% Algeria

In DAWN2, people with diabetes who were closely involved in their diabetes care experienced a higher degree of diabetes empowerment, better well-being, and reported receiving more support than people who were not involved in their care. Involvement in care was, however,

fessionals agree that better opportunities for Diabetes Self-Management Education are needed. Furthermore, healthcare professionals report a substantial need for more professional training to provide diabetes education. Nearly half of healthcare professionals recognize their need for more training in provision of self-management education and support for people with diabetes. Currently, only 20% of healthcare professionals have attended training in the management of psychological aspects of diabetes.2

Figure 1: Participation in education by country with 95% confidence intervals (DAWN2 study).1

Russian Federation

Self-management and the link to psychosocial health Diabetes self-management capability is strongly linked to psychosocial health and directly correlates to the well-being of an individual living with diabetes. Better outcomes and better quality of life are linked to receiving psychosocial support from others.4

Call for more training and more education of healthcare professionals People with diabetes and healthcare pro-

Turkey

These findings suggest that some healthcare professionals may consider a good level of care for people with diabetes to consist of attention to glycaemic control rather than to wider issues such as selfmanagement, empowerment, diabetes related worries and quality of life with diabetes.3

Access to diabetes education Less than half (49%) of the DAWN2 study participants, with wide variations by country (66%-90%), reported engagement in diabetes education programmes to help manage their diabetes care.1 People who had participated in diabetes education felt better equipped to manage their diabetes, were more actively involved in their diabetes care, received more support and reported better wellbeing compared to people who had not participated in diabetes education.

Mexico

52% of healthcare professionals reported that they ask their patients on a regular basis how diabetes impacts their lives, [but] only 24% of people with diabetes reported that they had been asked about this.

also linked to an increased risk of psychosocial problems due to the burden of diabetes, indicating that knowledge and awareness can also generate anxiety. This aspect may be important to consider when supporting and educating people with diabetes and their families.

India

In addition, 72% of people with diabetes reported having had their HbA1c measured in the previous 12 months, but only 45% had gone through a foot examination and even fewer (32%) reported being asked over the same period if they were anxious or depressed in relation to their diabetes.1

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Tipura, India

India World Diabetes Day 2012,

However, a substantial gap seems to exist between healthcare professionals’ perceptions and perceptions of people with diabetes regarding the professional practice of actively engaging and supporting people with diabetes in their care.

suggests that provision of self-management support is currently inadequate, particularly in terms of psychosocial support and diabetes education.

DAWN2 platform can provide valuable awareness of diabetes needs and gaps in provision of care and advocate improvement of diabetes support in all countries involved in the study.

Policy advocacy for further efforts in these areas is needed. Ingrid Willaing

Diabetes education is linked positively to involvement and support for selfmanagement. Yet, far too many people with diabetes do not have access to diabetes education at the moment. Almost two-thirds of all healthcare professionals recognise a need for major improvements in psychological support and diabetes education to help relieve the burden of having diabetes among people with diabetes. However, relatively few healthcare professionals are trained to provide education and support. Variation among countries is considerable regarding training needs. The DAWN2 study highlights, especially from the perspective of people living with diabetes, that good diabetes care requires self-management support. DAWN2 also

DiabetesVoice

Call for improvements Through the identification of current barriers to care, DAWN2 helps to identify new opportunities for improvements in diabetes healthcare provision: improved self-management, psychosocial services and education for people with diabetes are still lacking or inadequate for the majority of people with diabetes. The DAWN2 study has highlighted significant country variations in access to diabetes education and has identified groups of people with diabetes who were less likely to participate in diabetes education such as being of older age, having type 2 diabetes, being male, living in a large city, and not living alone. Prompted by country variations there are opportunities for best practices to guide improvements in the countries with greatest needs. The

Ingrid Willaing is Head of Patient Education at the Steno Diabetes Center in Gentofte, Denmark.

References 1. Nicolucci A, Kovacs Burns K, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013; 30: 767-77. 2. Holt RIG, Nicolucci A, Kovacs Burns K, et al. Second Diabetes Attitudes, Wishes and Needs (DAWN2™) study: cross-national comparisons on barriers and resources for optimal care – healthcare professional perspective. Diabet Med 2013; 30: 789-98. 3. M unro N, Holt RIG, Davies MJ, et al. DAWN2 study findings: psychosocial support and structured education need to be more widespread. Practical Diabetes 2013 30: 239-240. 4. P eyrot M, Burns KK, Hermanns N, et al. Correlates of psychosocial outcomes among people with diabetes in the DAWN2 study. Diabetes 2013; 62: A210.

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healthcare delivery

DAWN2 study results: provision of quality team-based and individualized diabetes care Sanjay Kalra and Richard Holt on behalf of the DAWN2 Study Group

Modern diabetes care demands the comprehensive knowledge of multiple medical, nursing and paramedical specialties and is ideally delivered by a coordinated team of experts. This care should be provided in an individualized or person-centred manner to improve its acceptability as well as its effectiveness. Diabetes care is constantly evolving, hopefully for the better. As we learn more and more about the condition, and understand its multifaceted complexities, the management of diabetes also becomes more challenging. The second Diabetes Attitudes, Wishes and Needs (DAWN2TM) study assessed views and perceptions of various stakeholders through a 360-degree prism in 17 countries. Respondents included people with diabetes, family members of people with diabetes, and healthcare professionals.1-3 Among the various domains

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studied, the provision of quality teambased and individualized diabetes care is an aspect which deserves close attention.

Only about one-third of people with diabetes felt that they are provided with personcentred care. To understand whether healthcare is being provided in an optimal manner, it is necessary to obtain feedback from both providers and service users, i.e., people with diabetes and their family members. This should be undertaken using validated tools, which lend themselves to accurate cross-sectional and longitudinal comparison. DAWN2 undertook to benchmark this aspect of diabetes care provision internationally.

Person-centred healthcare The best way of assessing the quality of the healthcare team is to ask the people they are supposed to serve. While almost all the people with diabetes who took part in this study rated their healthcare providers as being supportive most of the time, only about one-third of people with diabetes felt that they are provided with person-centred care.1 Over half of healthcare professionals, on the other hand, rated themselves as being person-centred in their approach.3 This discrepancy builds a case for better communication between healthcare teams and people with diabetes in their care. Overall, 86% of people with diabetes rated their healthcare team as being ‘somewhat’ or ‘very’ supportive in helping them,1 with significant differences between the highest and lowest coun-

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Health Delivery

try specific scores of 93% and 64%. In numerical terms, the healthcare team is rated as being supportive more often than friends, colleagues and other people in the community. Interestingly, a high proportion of healthcare professionals rank themselves as providing person-centred chronic illness care.3 Indian healthcare professionals report asking their patients how diabetes affects their lives ‘most of the time’ or ‘always’ in 73% of cases compared with the overall (17 country) proportion of 52%, Mexican healthcare professionals score themselves highest on both scales of personcentred care provision when asked how they perceive their own practice. Quality of care A more complex picture emerges when specific bio-psychological aspects of diabetes care are explored in DAWN2 study results. While three-quarters of all people with diabetes reported having their long-term diabetes control measured, just half report receiving simpler (but perhaps more time consuming) care such as foot examination and nutritional history taking.1 Just one-third of people with diabetes reported being asked a psychological history, highlighting the need for improvement in this regard. Of the 72% of people with diabetes who reported having had their long-term glycaemic control measured in the past 12 months, the Japanese respondents fared best (89%) while just 45% reported having had their feet examined (best case: UK 80%). A dietary history had been elicited from an even smaller proportion of people with diabetes (49%) with those from the Russian Federation reporting the best care in this regard (63%). Even more discouraging results emerge when quality indicators related to psychologi-

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health delivery

cal care are assessed. Only 32% of people with diabetes reported being asked if they had been anxious or depressed. Mexican healthcare teams performed best in this regard (56%). Overall, just 24% of people with diabetes said they had been asked how chronic illness affected their life ‘most of the time’ or ‘always’, with the most encouraging response coming from India (45%). Overall 47% of people with diabetes reported satisfaction with the organization of their diabetes care, ‘most of the time’ or ‘always’, with the highest satisfaction levels being noted in the Netherlands (65%). Educational programmes According to the results of DAWN2, just half of all people with diabetes, and one quarter of family members have attended educational programmes in diabetes, reminding us of another area that needs improvement. The highest percentage of people with diabetes participating in educational programmes was in Canada (83%), as compared with the overall figure of 49%.1 People with diabetes in China were the most likely to report that their education programmes were ‘somewhat’ or ‘very’ helpful (90%) (overall 81%). Despite a clear finding that family members who had undertaken health education found this activity helpful, the inclusion of family members in health education was disappointing with only 23% of family members reporting participation in this activity.2 Danish family members were most likely to have participated in such events (40%). When asked if the education programmes they attended were helpful, 72% of family members replied ‘somewhat’ or ‘very’ helpful, with the most positive response again coming from China (84%). Scope for improvement Just over half (52%) of family members

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reported that major improvement is needed in the earlier diagnosis and treatment of diabetes2 (responses ranging from 30% to 78%). A lower percentage of family members (43%) considered that major improvements were needed in medical care, including regular followup (range 25% to 57%).

Healthcare professionals were also emphatic in their opinion about the need for major improvements in diabetes care. Healthcare professionals were also emphatic in their opinion about the need for major improvements in diabetes care. Over three-quarters (79%) felt that improvement is needed in prevention of type 2 diabetes, while 68% wanted improvements in earlier diagnosis and treatment3 (range 46% to 85%). Threefifths of all healthcare professionals reported that major improvement is needed in the availability of resources for psychological support and care (overall 63%, range 42% to 79%), and for self-management education (global 60%, range 28% to 81%). Team-based care The importance of quality team-based care in diabetes can be gauged from the responses of healthcare professionals.3 A high proportion (58%, range 23% to 85%) agree that major improvement is needed in communication within the team, access to psychologists or psychiatrists for referral (overall 60%, range 28% to 83%), and availability of qualified nurse educators or specialist diabetes nurses (overall mean 64%, 29% to 90%). These results reflect the importance of a multidisciplinary and interdisciplinary team in diabetes care.

Conclusion What do these data tell us? There is certainly a high degree of inter-country variability. Each nation can learn from one another. Sharing best practice will clearly help to optimize the quality of diabetes care across the globe. An understanding of the options for people with diabetes and their family members will help healthcare professionals improve the standard of healthcare. Highlighting the importance of personcentred care will create an atmosphere in which individualized diabetes care is provided. The need for further resources and manpower expressed in DAWN2 should help stimulate the provision of quality team-based support. Sanjay Kalra and Richard Holt Sanjay Kalra is Endocrinologist at Bharti Hospital, Karnal, India and National Principal Investigator of the DAWN2 study in India. Richard Holt is Professor in Diabetes and Endocrinology at the University of Southampton and an Honorary Consultant Physician in Diabetes and Endocrinology at the University Hospital Southampton NHS Foundation Trust, UK.

References 1. Nicolucci A, Kovacs Burns K, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013; 30: 767-77. 2. Kovacs Burns K, Nicolucci A, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking indicators for family members living with people with diabetes. Diabet Med 2013; 30: 778-88. 3. H olt RIG, Nicolucci A, Kovacs Burns K, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national comparisons on barriers and resources for optimal care – healthcare professional perspective. Diabet Med 2013; 30: 789-98.

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the voice of more than 15,000 people who care for them DAWN2™ surveyed people with diabetes, family members and healthcare professionals in order to provide a better understanding of the psychosocial gaps and needs in diabetes care. The DAWN2™ study is part of the DAWN™ advocacy programme, which calls for concerted action across the global diabetes community to promote person-centred care and to overcome the psychosocial barriers to effective self-management. DAWN2™ is a Novo Nordisk initiative carried out in collaboration with the International Diabetes Federation (IDF), the International Alliance of Patients’ Organizations (IAPO) and the Steno Diabetes Center. To learn more about the DAWN2™ study and find out about DAWN™ tools designed to support psychosocial needs in diabetes care, please visit dawnstudy.com

THE IMPACT OF DIABETES ON EMOTIONAL AND PHYSICAL WELL-BEING

‘It’s hard to constantly have to take medicine and do injections. It encumbers daily life.’ Woman with type 2 diabetes, aged 62, Turkey

39%

of people with diabetes report that their medication routines interfere with their ability to live a normal life

39%

NEW PERSPECTIVES ON FAMILY BURDEN AND SUPPORT

‘What moved me was when my family quit eating certain foods because I had to. Finally, my diabetes was slowly but effectively 19 under the care and help 63 controlled of my family. Since then, 70 I have more confidently faced the hardship that the disease has brought.’

of family members would like to be more involved in caring for their relative with diabetes

Man with type 2 diabetes, aged 53, China

INVOLVEMENT AND SUPPORT FOR ACTIVE SELF-MANAGEMENT

‘My eldest son recommended that I go to a swimming pool, which I did. Little by little, I increased physical activity. I felt a surge of energy and strength, which helped my blood sugar level.’ Woman with type 2 diabetes, aged 42, Russia

70%

of healthcare professionals believe that family members play a vital role in good diabetes care

with diabetes and those 19

19%

of people with diabetes feel discriminated against due to their diabetes

COMMUNITY RESOURCES AND ATTITUDE OF SOCIETY

‘I have been discriminated against due to my diabetes. My husband’s relatives don’t understand, my friends don’t understand, and I face discrimination looking for a job.’ Woman with type 2 diabetes, aged 47, Japan

ACCESS TO QUALITY DIABETES CARE INCLUDING PSYCHOSOCIAL SUPPORT

‘The doctor who introduced me to insulin injected himself first to show me how it was done and then asked me if I could do it for myself (how could I refuse such a selfless gesture?) at the age of 14 – this helped me better than anything.’ Woman with type 1 diabetes, aged 68, UK

of people with diabetes find education programmes helpful

63%

of healthcare professionals recognise a major need for improved psychosocial support services

AVAILABILITY AND USE OF EDUCATIONAL AND INFORMATION RESOURCES

‘For me, it’s been positive. I’ve learned a lot in the camps for people that live with the disease.’ Woman with type 1 diabetes, aged 24, Spain

Changing Diabetes® and the Apis bull logo are registered trademarks of Novo Nordisk A/S

81%

COUNTRY PERSPECTIVES

DAWN2:

from insights to action International Diabetes Federation (IDF): Massimo Massi Benedetti Steno Diabetes Center: Ingrid Willaing and John Nolan International Alliance of Patients’ Organizations (IAPO): Katharina Kovacs Burns and Jo Groves

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The three global study partners to the DAWN2TM study are the International Diabetes Federation (IDF), the Steno Diabetes Center, and the International Alliance of Patients’ Organizations (IAPO). Together with Novo Nordisk, these partners oversee and work in collaboration to support the DAWN2 study execution, dissemination and translation. Below three international diabetes experts each representing leadership for DAWN2 global study partners, reveal their considerations and observations on study outcome, relevance, methodology and how DAWN2 findings will impact community and worldwide ‘Call to Action’ plans for improvements in diabetes person-centred healthcare.

Was the outcome unexpected or has it consolidated already existing perceptions? IDF: The DAWN2 study has provided further evidence for already widely diffused perceptions and in particular, has focused the attention on issues that have not been thoroughly explored in the past. By exploring the wide geographical variability, and exploring psychosocial issues in depth, DAWN2 further emphasizes the need for individually tailored solutions in order to solve the unmet needs of different populations living with diabetes.

life. Families and caregivers are already known to share the burden. The global number of persons with diabetes and their family members experiencing depression, for example, is significant, but more so. The stories of over 8,500 persons with diabetes, 2,000 family members and 4,800 healthcare providers captured in DAWN2 provide the details behind the numbers. These narratives have a strong relevance to IAPO as they are the ‘voice’ of the people affected by diabetes globally and nationally.

Steno: To a large degree, the DAWN2 study has confirmed the importance of psychosocial issues for life with diabetes, including glycaemic control and quality of life standards. What has been somewhat surprising is the degree to which diabetes has a negative impact on family members of people with diabetes; this is new knowledge. The finding that patient and family education resources are very sparse and sometimes absent in many countries, was also surprising.

Which of the findings are to be considered of major relevance and why? IDF: All the findings are of interest. However some of them are particularly relevant. In particular, the broad perception that inadequate attention is given to support people with diabetes and their families is emphasized by all categories in the study providing multifaceted evidence of the problem. Whether due to cultural or economic features, the lack of resources dedicated to psychosocial care of diabetes is widely acknowledged by the participating healthcare professionals’ need for more specific education. In general, delivery of education for people with diabetes and their families, which inherently includes a lack of training for

IAPO: IAPO and its members, like any of the partners’ anticipated results, have developed their own idea of the messages related to diabetes stress, anxiety, burden and negative impact on quality of

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professionals, is emerging as a much lower provision than required or expected. Other aspects of major interest for DAWN2 are represented by recognition of still existing discrimination, which might not even be explicitly perceived by people living with diabetes or the public according to the different environments in which they live. Furthermore, people who must treat their diabetes with insulin therapy seem to be even more discriminated against than the others. Steno: We observed the significant gap between perceptions of involvement of people with diabetes and the perceptions of involvement of their healthcare teams. Healthcare professionals seem to consider their level of care adequate for people with diabetes much more often than people with diabetes report this to be the case. Also, DAWN2 led to the observation that many healthcare professionals prioritise metabolic control over wider issues such as the emotional burden of diabetes and its effects on quality of life. The additional training needs of healthcare professionals required to enable a satisfactory level of diabetes care, including psychological and pastoral care, is considerable. An important DAWN2 finding is the inclusion of the family as an extremely important source of support, and thus an essential part of holistic diabetes care. IAPO: Such study findings have many areas of relevance and ‘surprise’. For example, people with diabetes and their families reported that diabetes had positive impacts on their lives. This is rarely acknowledged, let alone reported. Can this positive impact be attributed to better patient-centred healthcare? Maybe, but not necessarily. 69% of healthcare providers in DAWN2 stated that diabetes should be given

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higher priority in healthcare organizations, as they are not as well organized for the management of chronic conditions as they should be. DAWN2 also highlighted the need for more diabetes education: less than one-half of people with diabetes and less than one-third of family members participated in education. More striking results included how one-third of participating healthcare professionals had not received any training in the medical management of diabetes. Many other relevant findings from the DAWN2 study exist for each of the three groups.1,2,3

economic or geographical reasons for the variation. However, countries with better results may be able to support constructive developments in the face of substantial challenges.

How are we to interpret the wide variability between countries? IDF: A number of reasons can explain the wide variability of results, which might be due both to the study design and to environmental differences. It is important to consider that the recruitment of the study population has been executed on a pragmatic basis which has several practical advantages but does not allow for comprehensive standardisation of the characteristics of the interviewed subjects. However, major determinants for the differences between countries may be the overall differences between countries in terms varying healthcare systems, local and national laws and more importantly, socioeconomic and cultural standards. DAWN2 explores ‘perceptions’, which highlight expectations heavily influenced by individual and various population beliefs far beyond the restricted field of healthcare.

How do culture and environment impact international benchmarking? IDF: Great caution is required in utilising DAWN2 study results for international benchmarking. Due to the aforementioned environmental differences, analysis of meaning and the ‘weight’ of such results are to be interpreted according to a thoughtful evaluation of the environment from which they come. In fact the study is evaluating the perceptions of the ‘unmet needs’ of people with diabetes and of their families and not the quality of various aspects of the diverse diabetes care delivery systems. It is quite obvious that any expectations are strictly linked to the prevailing culture, the socioeconomic conditions, and by the deep beliefs of stakeholders and all such factors are different in the various studied environments.

Steno: The wide variability between countries in almost all areas of DAWN2 results is somewhat surprising, especially given the fact that it is not always evident what is responsible for the specific variation. Hence, it is not always possible to point out cultural,

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IAPO: There are wide variations across countries regarding health systems and patient-centred healthcare delivery, and no one country stands out as being the best in all aspects. For IAPO, this is not unusual. Country variability is common in many practices and policies, particularly regarding political, economic, cultural and other considerations.

Steno: The design and development of the study has, in order to provide a fair benchmarking process, paid substantial attention to the local adaptation of the questionnaire. Culture and environment are likely to have influenced variations between countries. However, the values and the systematic methodology of the DAWN2 study reflect an approach to dia-

betes care which makes it possible to independently benchmark cultural and environmental differences. Benchmarking creates a basis for the improvement of services in the future.

Should the findings from the various countries be analysed by the local community in order to better identify local needs? IDF: Definitely. There is a need for DAWN2 results to be analysed by the local community because these community stakeholders have all the necessary details for a legitimate interpretation. In fact, the unmet needs have to be matched to the prevailing culture in each given country. The identification of the factors, which determine the needs of the people with diabetes and their families, might not be an easy task but can only be the result of a profound evaluation of the local environment. Assessment of DAWN2 results by local stakeholders constitutes another difficulty related to the rapid evolution of societies everywhere in the world thereby providing information from local literature or from existing legislation insufficiently exhaustive, if not obsolete. Taking into account the methodological limits, international benchmarking should only be attempted once the critical factors existing in each country are examined, explored and validated. Steno: The DAWN2 study is designed to provide an opportunity for local communities and countries to consider specific ‘state of the union’ plans and benchmark these plans against the 16 other participating DAWN2 countries. The findings of DAWN2 provide country-specific knowledge, which can be translated into appropriate language and relevant, timely action in the local setting.

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COUNTRY PERSPECTIVES

IAPO: The priorities of people living with diabetes, their families and healthcare teams are different in every country and in every disease area, but from this diversity we have some common priorities. To achieve patient-centred healthcare we believe that healthcare must be based on respect, choice and empowerment. Involvement in healthcare policy, and access to support and information are key requirements for people living with diabetes.2

Do the findings allow for a specific global ‘Call to Action’ or should the ‘Call to Action’ be more country specific and based on evaluation of the local community? IDF: Despite the national differences, DAWN2 provides evidence for common attributes and identifies actions to be taken at a global level. However, specific actions to be implemented at the local level need to be tailored according to specific unmet needs and must take local culture, opportunities and barriers into consideration. Steno: The findings allow for global as well as local calls for action. The global ‘Call to Action’ could very well encompass concrete suggestions for appropriate overall strategies, methods and tools to support improvement of diabetes care in the local setting. Those in the local setting will draw on their qualifications and knowledge to prioritize the actions and to choose and further develop the relevant support tools. The overall results of DAWN2 can further guide local communities in seeking support or taking further steps in collaboration with relevant countries involved in the study. IAPO: Global findings are useful to make a case for advocacy and a ‘Call to Action’ for improvements in patientcentred healthcare within and across all

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countries. This call may be global as part of IAPO’s mandate, but the action will be encouraged at local and national levels.

Overall, what value are you giving to the DAWN2 study for the improvement of life of people with diabetes? IDF: The results of the DAWN2 study offer the international community the opportunity to reflect on problems faced by people with diabetes in a vast number of countries and consequently tailor global action. Such results can be of help in identifying the strategic way forward in conjunction with major international agencies such as the UN, WHO, regional governing institutions like the EU or ASEAN and the private sector. Furthermore, participating DAWN2 study countries now have an opportunity to deliver better diabetes information to the attention of national governments and local administrators for more pragmatic and effective action, customized according to specific unmet needs and local environmental factors. Steno: Steno Diabetes Center’s long-term strategy prioritises translational research into best quality diabetes care and prevention. Participation in DAWN2 is a privilege for Steno and supports our commitment to integrating the medical, biological and behavioural aspects of diabetes care. The DAWN2 study has a unique potential to inspire and influence diabetes care practices and, in so doing, enhances the quality of life for people with diabetes and their family members. The results of DAWN2 provide people with diabetes, their families and their healthcare teams with important new data to support collaborative efforts to improve clinical care. The upcoming DAWN Summit in 2014 will be an important next step towards realising this ambition.

IAPO: What IAPO members, particularly the diabetes associations in the case of DAWN2, will value from the global and national findings is the extent of issues and concerns as perceived by not only the persons with diabetes but also family members and healthcare providers. The value of these cross-national findings aligns with the vision, mission and mandate of IAPO: focused on patientcentred healthcare worldwide, including psychosocial, education and treatment needs of persons living with any chronic condition including diabetes, and their families and caregivers.

Massimo Massi Benedetti, Ingrid Willaing, John Nolan, Katharina Kovacs Burns and Jo Groves Massimo Massi Benedetti is President of the Hub for International health ReSearch, Perugia, Italy. Ingrid Willaing is Research Manager, Patient Education Research for the Steno Diabetes Center, Denmark. John Nolan is CEO and Head of the Steno Diabetes Center, Denmark. Katharina Kovacs Burns is Director, Interdisciplinary Health Research Academy and Associate Director, Health Sciences Council; Edmonton Clinic Health Academy, University of Alberta, Edmonton, Alberta, Canada. She is also representative of the International Alliance of Patients’ Organizations (IAPO) on the DAWN2 Study Group and represents IAPO as a member of the DAWN2 Study Group and International Publications Planning Committee. Jo Groves is CEO of the International Alliance of Patients’ Organizations (IAPO).

References 1. International Alliance of Patients’ Organizations. Vision, mission and mandate. IAPO. http://www.patientsorganizations.org/ showarticle.pl?id=7&n=101. 2. International Alliance of Patients’ Organizations. Declaration on patient-centred healthcare. IAPO. 2006. http://www.patientsorganizations.org/attach. pl/712/1051/IAPO%20Declaration%20on%20 Patient-Centred%20Healthcare%20Poster.pdf. 3. Nicolucci A, Kovacs Burns K, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013; 30: 767-77.

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DAWN2 study results:

The DAWN2TM study involved three separate quantitative surveys: one for people with diabetes, one for family members and one for healthcare professionals totalling 15,438 participants from 17 countries. Data was systematically coded in cooperation with collaborators in each of the DAWN2 countries. In an effort to review key insights and future objectives from a set of very diverse regions, abbreviated reports from the following nine participating DAWN2 study countries are provided: Algeria, Canada, China, Denmark, India, Italy, Mexico, Russia, and Spain.

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a sample of country reports

December 2013 • Volume 58 • Special Issue 2

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COUNTRY PERSPECTIVES

DAWN2: results from Algeria Reducing the burden of care with multi-sector collaboration Rachid Malek

Diabetes in Algeria represents a new challenge and a severe burden on people with diabetes and their families.

The DAWN2 study investigated psychosocial aspects of living with diabetes, revealing a very high level of distress related to the condition shared by people living with diabetes and their families. For the majority of participants surveyed in DAWN2, diabetes is a burden. For two thirds of people living with diabetes and their families, the primary focus of diabetes is considered glycaemic control, which often minimizes psychological aspects connected to the burden of living with the condition. Diabetes social discrimination is found in every fourth case of diabetes in Algeria, as confirmed by relatives of people living with diabetes, placing Algeria among the worst for discrimination in the 17 countries included in DAWN2. In terms of healthcare perception, doctors appear to be more concerned about psychosocial aspects than paramedics, who are often called upon to help people with diabetes in emergency situations. Two-thirds of the people with diabetes in Algeria say they have family support and generally understand the management of diabetes.1,2

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Only 47% of people with diabetes in Algeria reported having participated in a programme of therapeutic education or diabetes self-management education. More than three-quarters of the interviewed professionals are aware of the issues related to low-level participation of diabetes self-management education, and risks associated with hypoglycaemia are the main concern for healthcare professionals.3 Within the framework of a national programme, a multidisciplinary approach to diabetes care has been developed by the Algerian Ministry of Health. Collaboration between the healthcare sector and the government includes initiatives to improve diabetes education for healthcare professionals and to help integrate the national diabetes associations’ commitment to combat discrimination. Algerian society in general and people with diabetes in particular must get rid of the taboos and myths related to diabetes, which create barriers to effective diabetes self-management. Coordinated by the health authorities and in collaboration with the healthcare professionals, patient associations and the pharmaceutical industry, several actions aimed at multidisciplinary care and education for people with diabetes have been taken including diabetes foot care, holidays

for children with diabetes, and managing challenges associated with Ramadan. Training provided by the French-speaking diabetology society to Algerian paramedics is a pioneering initiative for the country. Through the media, more active communication with the public about diabetes is critical for awareness and progress.

Key challenges in Algeria The DAWN2 findings in Algeria pointed out: ■ The urgent need for a more structured and systematic approach to patient education in Algeria. ■ The importance of a multidisciplinary approach to diabetes management that fully takes into account psychosocial needs of people living with diabetes and their families, and that fully integrates paramedics and psychologists into the healthcare team. Objectives for activities: ■ To establish training and official certification for diabetes educators in Algeria and agree on national guidelines and methodology for patient education in Algeria. ■ To agree on national guidelines for improved multidisciplinary management of diabetes.

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COUNTRY PERSPECTIVES

DAWN2: results from Canada Study findings will play a pivotal role for diabetes care in Canada Michael Vallis

Canada achieves several important aspects of effective diabetes management, but falls short when addressing psychosocial needs.

The international benchmarking data from DAWN2 suggest that diabetes healthcare in Canada excels in several aspects of management. Compared to data collected in other DAWN2 countries, Canadian participants with diabetes and family members report less diabetes distress and worry over hypoglycaemia. Also, DAWN2 results indicate that these Canadian study respondents are more likely to engage in diabetes education leading to the assumption that Canadian healthcare providers place great emphasis on the need to improve self-management and healthy eating. Canada did not participate in the first DAWN study. Therefore, DAWN2 performs a dual role for the region. Critically important are the data indicating how common diabetes distress is, relative to likely depression, and how this will influence future diabetes care practice. Canadian Clinical Practice Guidelines have recommended screening for depression since 2002, but recognising how the burden of diabetes is associated with distress adds a new dimen-

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sion that will challenge current practice. Currently, Canadian healthcare doesn’t offer universal access to psychological services and although Canadians can access psychological services through the public health system, access to these services is rarely a part of standard practice for diabetes care programmes. Results of the DAWN2 study may help integrate psychological specialists, administrators and policy-makers to bridge this divide. Importantly, the voice of the individual living with diabetes is not often included in deliberations about such integration and DAWN2 can help reverse this.

initiatives to develop a more functional diabetes community.

Currently, Canadian healthcare doesn’t offer universal access to psychological services.

■ Distress related to diabetes is serious

The DAWN2 study may help healthcare professionals see the need to better address relationships: one example reflecting the burden a family feels when diabetes is present in the home is how family members may try to be supportive but individuals with diabetes tend not to reach out. Additionally, healthcare providers often believe they are addressing psychosocial issues in their work but individuals with diabetes may not feel that this is the case. The DAWN2 results will help progress

The future for the diabetes community in Canada is hopeful in that we have recognized the importance of effective diabetes management. DAWN2 is pivotal in that it will help us correct the past tendency to be silent on the psychosocial aspects of diabetes management. Key challenges in Canada The DAWN2 findings in Canada pointed out: and can be alleviated when supportive measures are put into place. ■ Psychological services are rarely part of standard practice for diabetes care programmes. Objectives for activities: ■ Prioritizing integration of diabetes medical care and psychosocial services with the help of policy-makers, administrators and psychologist specialists. ■ Listening to the voice of the individual living with diabetes in deliberations about such integration thus correcting the past tendency to be silent on the psychosocial aspects of diabetes management.

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DAWN2: results from China Changing diabetes in China with education Xiaohui Guo

China confronts a strong unmet need for diabetes education by standardising training and care guidelines.

The number of people with diabetes in China has increased considerably in the past decade reaching 92.3 million adults (8.8% of the population) in 2012.4 Recent projections suggest that up to 113.9 million Chinese adults now live with diabetes (11.6%) and 493.4 million with prediabetes.5 The DAWN2 study revealed that, for those respondents from China, 48% of people with diabetes and 74% of family members never attended any diabetes education programme, highlighting a strong unmet need for diabetes education. Only 53% of healthcare professional respondents in China agreed that all of their diabetes patients were offered structured diabetes education, indicating a shortage of available educational resources. The Study Group of Diabetes Education and Management, supported by the Chinese Diabetes Society (CDS), was established in 2007 to confront the intensive need in China. More than 400 professional diabetes educators have been certified by CDS in the past 6 years, compared to the previous record of 50

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trained diabetes educators in 2007. Nevertheless, this number still could not satisfy the huge demand for education in China. In the past six years, the Study Group has been dedicated to: ■ S tandardizing diabetes education content by establishing several guidelines: for example, Guidelines for Diabetes Care and Education in China, Guidelines for Insulin Education and Management, and Exercise Guidelines for Management of Diabetes.6,7,8 ■ Prompt dual-certification for qualified diabetes education, thereby certificating the diabetes educator and, thereafter, hospital education programmes provided by the Certified Diabetes Educator.

DAWN2 study in China revealed that 48% of people with diabetes and 74% of family members never attended any diabetes education programme. The work of the Study Group is currently focusing on the standardization of diabetes education materials and novel education formats for social media in order to achieve better support and more effective education for people with diabetes and their family members. In

addition, a randomized controlled trial, led by the Study Group, is underway to provide solid evidence and possible directions for future improvements. In conclusion, the Study Group of Diabetes Education and Management is performing a series of initiatives, and leading diabetes education into a new era in China to meet the massive requirements and provide better support for people with diabetes.

Key challenges in china The DAWN2 findings in China pointed out: ■ Nearly half of people living with diabetes and three-quarters of family members have not attended diabetes educational programmes. ■ There is an inadequate number of trained diabetes educators to satisfy demand and a shortage of educational resources for patients and healthcare professionals. Objectives for activities: ■ Implementation of standardized diabetes education guidelines. ■ Enhancement of certified diabetes education and hospital education programmes.

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COUNTRY PERSPECTIVES

DAWN2: results from Denmark The psychological impact of living with diabetes Allan Jones

In Denmark, half of people with diabetes reported a daily strain on their mental and physical energy. People with diabetes who depend on insulin therapy for treatment reported a lower quality of life than people with diabetes who are not insulin users.

Results from the DAWN2 study in Denmark highlight some challenges in the care and management of people with diabetes and their families. People with diabetes who depend on insulin therapy for treatment reported a lower quality of life than people who are not insulin users. Half of all people in Denmark with diabetes reported that living with diabetes was a daily strain on their mental and physical energy while just under half of all people with diabetes (49%) reported that their diabetes impaired their physical health. While the burden of living with diabetes has challenging aspects for all people with diabetes, DAWN2 study results suggest that the psychological impact of living with type 1 diabetes may be greater. People with type 1 diabetes reported lower levels of well-being than people with type 2 diabetes (type 2 diabetes, non-insulin users); were more depressed than people with type 2 diabetes (type 2 diabetes, diet only); reported a larger

December 2013 • Volume 58 • Special Issue 2

impact on life from living with type 1 diabetes; and were more worried about the risk of hypoglycaemic events compared to people with type 2 diabetes.1 Problems with interpersonal relationships that affect social support can be a source of distress for people with diabetes and can impair the ability to manage diabetes effectively.9,10 Up to a quarter of family members who participated in DAWN2 reported that living with diabetes has a negative impact on their relationship with the person with diabetes. However, 60% of family member participants reported no impact of living with diabetes, with the remaining participants reporting a positive impact of living with diabetes.2 Since the first DAWN study, increased attention on diabetes care has contributed to advances in healthcare provision. There is still, however, a need for systematic and frequent monitoring of psychosocial barriers to achieve effective diabetes management at the primary care level, as well as client-centred psychosocial care provision that will incorporate support networks, outreach and e-health programmes to improve reach and accessibility. Denmark has already implemented plans and actions at the local level that attempt to address the issues raised above. The hope for the diabetes

community is that the knowledge gained from DAWN2, will help to inform shared models of best practice on a national and international level with the purpose of removing psychosocial barriers in the management of diabetes. Key challenges in Denmark The DAWN2 findings in Denmark pointed out: ■ People who require insulin therapy report lower levels of psychological wellbeing and quality of life than people with diabetes who do not use insulin. ■ People with type 1 diabetes report more psychological distress than people with type 2 diabetes. ■ More than half of the family members of people with diabetes report no impact of the condition on their lives. Objectives for activities: ■ To better monitor psychosocial barriers to improve effective diabetes management in primary care. ■ To improve provision of psychological support in managing diabetes, with increased emphasis on people with type 1 diabetes. ■ To develop support networks and e-health opportunities that increase the reach and accessibility of healthcare provision.

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DAWN2: results from India Person-centred partnerships and empowerment are key for progress Sanjay Kalra

India’s healthcare practices related to fundamental diabetes care lag behind other DAWN2 countries.

The DAWN2 study sheds some light on India’s progress in its quest to be known as the diabetes care capital of the world. The respondents from India report high scores of person-centred care, and also strong support from family, community and healthcare teams. This is consonant with the country’s deep-rooted sociocultural ethos. Yet, much more needs to be done. Healthy self-management needs to be reinforced in India, which, in this study, ranked poorly in self-monitoring, adherence, and foot care. Healthcare practices related to measurement of longterm blood glucose control and foot examination lag behind other DAWN2 countries. Indian respondents reported low participation in educational programmes, and even lower numbers who find participation useful. Also reported are the negative impact of diabetes and experiences of societal discrimination relatively more often than in other DAWN2 countries. According to the results of the study, areas that require addressing include primary preven-

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tion, earlier diagnosis and treatment of diabetes, and concerns about the risk of hypoglycaemia. Also reported are the need for more diabetes educators and nurses, access to psychologists and psychiatrists, and better communication within the healthcare team.

According to the results of the study, areas that require addressing include primary prevention, earlier diagnosis and treatment of diabetes, and concerns about the risk of hypoglycaemia. The enthusiasm of healthcare professionals towards training, however, is reason enough to smile. In order to achieve meaningful improvement, this is what is needed most: a communicative team of professionals, working in personcentred partnership with people who are empowered to manage life with diabetes in their community, constantly trying to improve the quality of their work.

national guidelines,11 and programmes on Non-communicable Disease control. The Changing Diabetes® Barometer,12 an example of public-private partnership, and the National Diabetes Educator Programme,13 help build capacity, and are supplemented by local initiatives such as the lay diabetes educator project in Gwalior.14 The DAWN2 results should stimulate introspection, as well as action, across India, and help improve the quality of diabetes care.

The ‘Seven Sister Stakeholders’ in Diabetes Care ■ Persons with diabetes ■ People who matter (family, friends, colleagues) ■ Public (community) ■ Physicians and paramedical professionals ■ Priests and preachers (religious leaders) ■ Policy-makers and planners (govern-

Recently, India has seen successful models of multi-stakeholder involvement (see Box). Direction is provided by

ment, private health systems) ■ Payers (insurance, reimbursers)

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DAWN2: results from Italy Psychosocial care needs to be a priority Marco Comaschi

Low degree of care integration in Italy provides basis for severe or moderate distress in connection with diabetes.

In 1987, the Italian Parliament released a law about diabetes (L. 115/87)15 that ruled in favour of the rights in relation to treatment, care and social needs in work and at school for people with diabetes. The Italian National Health Service, or Servizio Sanitario Nazionale, is organized in a federal way, and the institutions of the 21 Italian regions are uniquely responsible for delivering care. As a result, large heterogeneity is present in the different regions, although minimal levels of medical assistance are guaranteed in every region. The Diabetes Outpatient Clinics network, comprised of more than 600 clinics country-wide with dedicated teams for people with diabetes, cares for approximately 50% of all people living with diabetes – equal to more than 3 million citizens or 5% of the Italian population. The other 50% is cared for by general practitioners in a scarcely integrated way. With the endorsement of the Italian Ministry of Health, Italy performed its

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first DAWN study in 2005-2006. For DAWN2, Italy participated contemporaneously with 16 other countries and the results for Italy, in comparison particularly with the other DAWN2 European countries, show a greater trend to depression for people with diabetes and family members, associated with low participation in diabetes educational activities and low post-graduate training of Health Care Operators (HCOs) in communication and psychological interventions. About 40% of people with diabetes in Italy make reference to ‘poor’ or ‘not good’ for well-being caused by emotional problems, and more than one-fifth are prone to depression with more than half also identifying severe or moderate distress in connection with their diabetes. HCOs give different answers about many items of the survey, showing a low degree of integration. The DAWN project in Italy is contributing to the Italian National Health Service’s progress to achieve better health and quality of life outcomes in diabetes, made possible through an on-going dialogue and collaboration with institutions and key stakeholders. Recent progress has led to many activities and to the preparation of key documents and reports: the Ministry of Health released in February 2013

a new National Plan for Diabetes,16 inspired by the Chronic Care Model, and essentially based on integrated care between primary and secondary care and on the involvement of the associations of people with diabetes as the principal stakeholder.

Key challenges in Italy The DAWN2 findings in Italy pointed out: ■ The great need for information and education of people with diabetes, and of their families, is not met by the health system. ■ Poor communication among healthcare professionals exists in different settings.17 Objectives for activities: ■ Promotion of the nation-wide adoption of a patient-centric care model. ■ Crucial to the implementation of the project is the involvement of institutions and key stakeholders, through an on-going dialogue and collaboration.

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DAWN2: results from Mexico Poor access to education Miguel Escalante Pulido and Ivone Ataí Coronado Cordero

Many barriers exist in Mexico that negatively impact effective management of diabetes, and poor access to diabetes education is a principal cause. Mexico ranks sixth in the world in terms of the number of people with diabetes. Approximately 11 million people in Mexico are estimated to have diabetes, and the prevalence has more than doubled from 6.7% in 1993 to 15.6% in 2012.4 According to the results of the DAWN2 study, only 20% of people with diabetes in Mexico have access to proper diabetes information and education.1 Diabetes is one of the leading causes of death in Mexico with approximately 80,000 lives lost per year.18 The DAWN2 study suggests that many barriers exist in Mexico that negatively impact on the effective management of diabetes, including poor access to diabetes education. People with diabetes and their families require access to information because it empowers them to make healthy lifestyle choices and engage in appropriate levels of physical activity, proper nutrition and avoidance of alcohol and smoking. Mexico’s national policies do not support the special needs of people living with diabetes, and DAWN2 interview data suggests that less than 20% of people with diabetes receive information and

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education to fit their needs.1 The DAWN2 results also indicate that, in order to improve the state of diabetes care in Mexico, it will be necessary to develop a National Diabetes Education Programme to provide training for diabetes educators, doctors, nurses and psychologists. The results of the DAWN2 study in Mexico help emphasize the need to improve current diabetes care and address existing problems such as the limitations of current resources, unacceptable management of hyperglycaemia and inadequate training of healthcare team members. Achieving these goals will require collaborative efforts by policy-makers, international organizations, healthcare providers, those setting medical school curricula, people who live with diabetes and society as a whole. Furthermore, access to diabetes specialist care is limited in Mexico, and often provided many years after diagnosis and after complications have arisen. It may be necessary for the Mexican authorities to re-evaluate the primary healthcare infrastructure, utilize a comprehensive multidisciplinary team approach and establish policies to ensure the efficient use of every diabetes treatment resource. In order to support healthcare professionals involved in the integrated management of diabetes, some Mexican

clinics with the highest and most poorly controlled diabetes population have initiated a pilot multidisciplinary education programme provided to every professional in charge of the care of people with diabetes and their family members, with implementation of seven self-care behaviours and principles of psychosocial management.19 After six months of participation in the programme, people with diabetes and their families experienced an increase in general knowledge of diabetes and treatment practices with fewer myths and fears about insulin therapy and improved dietary habits. Implementation of this strategy will optimize future use of human and economic resources, improving the quality of life of people with diabetes in Mexico. Key challenges in mexico The DAWN2 findings in Mexico pointed out: ■ Access to diabetes education is very poor. ■ Less than 20% of people with diabetes receive adequate information and education. Objectives for activities: ■ Re-evaluation of primary healthcare structure to establish multidisciplinary approach to diabetes care.

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DAWN2: results from Russia Shortage of training for diabetes education leads to increased fears Marina Shipulina

Only a minority of people with diabetes attend diabetes education in Russia and a fear of insulin therapy increases the risk of complications for people with type 2 diabetes.

One of the most serious issues identified by the DAWN2 study results from Russia is the low level of participation by people with diabetes and their families in ‘diabetes school’ or education programmes for diabetes self-management. Only 37% of people with diabetes in the study reported participation in educational training. Overall this figure varied between 23% for Indian and 83% for Canadan respondents. Among family members of people with diabetes only 12% reported attending diabetes training. Overall, this varied between 12% in the Russian Federation and 40% in Denmark.1 Low attendance in Russia is primarily connected to a shortage of such ‘schools’. Consider Dr. Elliott Joslin who set up the first ‘diabetes school’ in the 1920’s and implemented the idea that people with diabetes require strict discipline and active participation in self-management. Joslin believed ‘a shortage of training is as dangerous as a shortage of insulin’. Another significant problem connected to diabetes education in Russia is doctor

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and patient fears related to intensive diabetes treatment especially when the time has come to begin insulin therapy for people with type 2 diabetes. The fear associated with insulin therapy greatly increases risk and development of serious diabetes complications. In Russia, diabetes organisations conduct active diabetes informational programmes, often led by people who have successfully mastered insulin therapy. Results of the DAWN2 study will help reinforce priorities for best diabetes care practice and invigorate initiatives to establish greater resources across Russia. Key stakeholders for resolving the lack of resources or participation in Russia are, above all, leaders of federal and regional healthcare bodies. To confront this issue, Russian diabetes organisations publicly advocate the need for better diabetes support and education on behalf of people with diabetes and their families. In addition, virtually all diabetes organisations in Russia have long since been systematically working as public ‘diabetes schools’ for people with diabetes and their family members. One of the latest examples of successful collaboration between the diabetes community and top-level officials for improving diabetes began in 2012. Public hearings were held on diabetes topics in

42 of Russia’s regional Parliaments where they discussed a National Resolution including specific recommendations for stepping up the fight against diabetes. At the culmination of this large scale initiative, the Public Chamber of the Russian Federation held hearings on recommendations for diabetes education among other issues with the participation of government officials, the science and medical communities, the pharmaceutical industry, the media and public organizations and submitted generalized national recommendations to the Prime Minister of the Russian Federation, Mr Medvedev.

Key challenges in russia The DAWN2 findings in Russia pointed out:3 ■ Almost half of healthcare professionals have attended post-graduate training in the medical management of diabetes. ■ Only 11% of healthcare professionals have attended training in the psychological management of diabetes. ■ 37% of people with diabetes have received education and diabetes selfmanagement support. ■ Only 12% of family members of people with diabetes have had any education or training.

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DAWN2: results from Spain Improving diabetes care training for healthcare professionals Edelmiro Menéndez Torre

Inadequate diabetes education prevents effective training and support for diabetes self-management in Spain.

The DAWN2 study revealed several key issues for people with diabetes in Spain. A large number of people with diabetes recognize that managing the condition has a negative impact on their physical and emotional health. Healthcare professionals reported insufficient diabetes training to help patients live a better quality of life. People with diabetes often acknowledge how living with the condition negatively impacts their life and well-being, especially limiting their leisure activities and to a lesser extent their work, studies or personal relationships. They understand the importance of prioritising good glycaemic control, but there is often a conflict because the greatest concern for many people living with diabetes and their families is the risk of hypoglycaemia, especially during the night.1,2 Active self-management is essential for people with diabetes to achieve glycaemic control, associated with a better quality of life. Results of DAWN2 for

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Spain indicate that a significant proportion of healthcare professionals believe there is an inadequate number of qualified diabetes educators or specialized diabetes nurses to carry out effective training and support for diabetes selfmanagement.3 Although perceived as very useful, diabetes educational interventions are not available for a significant percentage of people with diabetes; less than one third of people with diabetes in Spain had the opportunity to visit a diabetes educator in 2012.1 DAWN2 also identified a need to improve communication between diabetes healthcare professionals and their patients.3

Although perceived as very useful, diabetes educational interventions are not available for a significant percentage of people with diabetes. DAWN2 study results have helped identify fundamental measures needed to achieve better access to diabetes education in Spain. A wide range of stakeholders from local health authorities to the Ministry of Health are needed to establish training programmes for healthcare professionals who care for people with diabetes. It will also be imperative to

have specific plans to enhance diabetes education in the specialised and primary care settings. While formalised patient education is essential for diabetes selfmanagement, it must also include emotional and psychosocial support, two key aspects of care.

Key challenges in Spain The DAWN2 findings in Spain pointed out: ■ Only one-third of people with diabetes have the opportunity to consult a diabetes educator. ■ Healthcare professionals believe enhanced training resources are needed to provide broader diabetes self-management education and better outcomes. Objectives for activities: ■ To establish a process whereby diabetes self-management education is available to more people diagnosed with diabetes. ■ To improve communication skills among healthcare professionals.

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Rachid Malek, Michael Vallis, Xiaohui Guo, Allan Jones, Sanjay Kalra, Marco Comaschi, Miguel Escalante Pulido, Ivone Ataí Coronado Cordero, Marina Shipulina and Edelmiro Menéndez Rachid Malek is Professor and Head of the Internal Medicine Department, University Hospital Setif. He is also the National Coordinator of DAWN2 study in Algeria.

Marco Comaschi is Professor of Medicine, Chief of Diabetic Foot Centre – ICLAS Clinic – GVM Care & Research Group in Rapallo (Genoa), Italy and Chair of DAWN2 study in Italy.

Michael Vallis is Psychologist, CDHA Behaviour Change Institute and Associate Professor, Dalhousie University, Halifax, Canada.

Miguel Escalante Pulido is Head of the Endocrinology Department at the Hospital de Especialidades, Centro Medico Nacional de Occidente, Mexican Institute of Social Security in Guadalajara, Mexico.

Xiaohui Guo is Professor at the Endocrinology Department of Peking University First Hospital, Beijing, China. Allan Jones is Associate Professor in Clinical Psychology at the Institute of Psychology, University of Southern Denmark. Sanjay Kalra is Endocrinologist at Bharti Hospital, Karnal, India and National Principal Investigator of the DAWN2 study in India.

Ivone Ataí Coronado Cordero is Psychologist at Universidad de Guadalajara in Guadalajara, Mexico. Marina Shipulina is Head of the St. Petersburg Diabetes Association, Russian Federation. Edelmiro Menéndez Torre is Endocrinologist, Department of Endocrinology and Nutrition Services, Hospital Universitario Central de Asturias in Oviedo, Spain.

10. Schiøtz ML, Bøgelund M, Almdal T, et al. Social support and self-management behaviour among patients with Type 2 diabetes. Diabet Med 2012; 29: 654-61. 11. Kalra S, Sridhar GR, Balhara YS et al. National recommendations: psychosocial management of diabetes in India. Indian J Endocr Metab 2013; 17: 376-95. 12. Jain P, Aamand N. Changing diabetes® barometer: a global quality monitoring framework for improving patient outcomes. J Soc Health Diabetes 2013; 1: 44-7.

3. H olt RIG, Nicolucci A, Kovacs Burns K, et al. Second Diabetes Attitudes, Wishes and Needs (DAWN2™) study: cross-national comparisons on barriers and resources for optimal care – healthcare professional perspective. Diabet Med 2013; 30: 789-98.

13. Joshi S, Joshi SR, Mohan V. Methodology and feasibility of a structured education program for diabetes education in India: the National Diabetes Educator Program. Indian J Endocr Metab 2013; 17: 396-401.

4. I nternational Diabetes Federation. IDF Diabetes Atlas, 5th edn. 2012 Update. IDF. Brussels, 2012.

14. Agrawal N, Agrawal S, Singh S. Fighting diabetes with education: the Dia Mitra project, Gwalior. J Soc Health Diabetes 2013; 1: 99.

5. X u Y, Wang L, He J, et al. Prevalence and control of diabetes in chinese adults. JAMA 2013; 310: 948-59.

15. Legge 16 Marzo 1987 n. 115. Disposizioni per la prevenzione e la cura del diabete mellito. http://www.trovanorme.salute.gov.it/dettaglioAtto?id=21146

6. T he Study Group of Diabetes Education and Management, Chinese Diabetes Society. Guidelines for Diabetes Care and Education in China. 2009. http://cdschina. org/news_show.jsp?id=386.html

16. Piano Nazionale sulla Malattia Diabetica. http://www.diabeteitalia.it/files/files/ UTI-PND-web.pdf

7. C hinese Diabetes Society. Guidelines for Insulin Education and Management. Tianjin Science & Technology Press. Tianjin, 2011. 8. Chinese Diabetes Society. Exercise Guidelines for Management of Diabetes. Chinese Medical Multimedia Press. Beijing, 2012. 9. K arlsen B, Oftedal B, Bru E. The relationship between clinical indicators, coping styles, perceived support and diabetes-related distress among adults with type 2 diabetes. Journal of Advanced Nursing 2012; 68: 391-401.

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17. T he DAWN Study Italy Report. http://www.dawnstudyitaly.com/DAWN_italy.html 18. Cordova-Villalobos JA, Barriguete-Meléndez JA, Lara-Esqueda A, et al. Las enfermedades crónicas no transmisibles en México: synopsis epidemiológica y prevención integral. Salud Pública Mex 2008; 50: 419-27. 19. González-Villaseñor AC, Muñoz-Magallanes T, Ramos-Valdes C, et al. Efectos del control metabólico en pacientes con DM2, comparando una dieta de bajo índice glucémico con una dieta convencional. Memorias del L Congreso internacional de la Sociedad Mexicana de Nutrición y Endocrinología, A.C. Revista de Endocrinología y Nutrición 2010, suplemento Nov.

DiabetesVoice 49

Diabetes in society

Discrimination and Massimo Massi Benedetti

The DAWN2TM study has categorized a massive amount of information on different aspects of the needs of people with diabetes, and the findings on discrimination are amongst the most interesting. The history of the condition provides many examples of its unacceptable consequences. Diabetes has been known about for more than 5,000 years and until the discovery of insulin in 1921, type 1 was a deadly condition giving no hope of survival, while type 2 was invariably associated with the occurrence of devastating complications, disability and premature mortality. Procreation was not usually an option for those with type 1 diabetes given the short time-span between onset and death, while type 2 diabetes or diabetes occurring during pregnancy was the cause of miscarriage, stillbirth, congenital malformations in the child and severe complications for the mother. Until relatively recent years, up to the 1970s, pregnancy was heavily discouraged, nearly forbidden, both in type 1 and type 2 diabetes, while male impotence and infertility were quite frequent. At the beginning of the ‘insulin era’ the main objective was the survival of people

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with type 1 diabetes striven for by rigid therapeutic regimes of rudimentary insulin, characterized by severe metabolic instability with frequent occurrence of hypoglycaemia and ketoacidosis resulting in very poor quality of life. The discovery of oral hypoglycaemic agents in the early 1950s resulted in a longer survival of people with type 2 diabetes although the concept of near-normoglycaemia was far from being contemplated, and insulin therapy in type 2 diabetes was considered as the last desperate chance before death. As a result, the longer survival and the poor quality of glucose control increased the number of people with long-term complications. Diabetes, both type 1 and 2, was the leading cause of blindness, amputations and end stage renal disease, heavily affecting the lives of people with diabetes with respect to family life, work, sport and leisure activities, and in any other aspect of personal and social activities. Under these conditions it is not surprising that the low self-esteem of people with diabetes combined with the perception of society produced a common cultural understanding of diabetes as a chronic disabling disease producing a heavy burden both for the affected

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Diabetes in society

diabetes person and for society. More recently, in order to overturn that perception a great deal has been done and much achieved, such as new information on the risk factors for the development of complications, more stringent metabolic targets made possible by new therapies (more efficacious types of insulin and more flexible insulin regimes with a variety of options for safer, less painful, and more effective insulin delivery and a variety of oral hypoglycaemic agents for type 2 diabetes), new systems for the monitoring metabolic control and overall improved diabetes care. In the past few decades the situation for people with diabetes has radically changed in a positive direction: at present their life expectancy can be similar to that of the general population, the chronic complications can be prevented and there are, at least potentially, no limits to the achievement of an individual’s personal potential. Diabetes is no longer such a deadly disease. With vigilance, determination and access to adequate professional guidance and medicine, the life of the individual with diabetes is compatible with a ‘normal’ life and full integration in society. However, such a dramatic and rapid change has not yet penetrated the general cultural

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understanding, which is still influenced by the previous history of more than 50 centuries. A significant number of people, even those living with diabetes and their families, are still not fully aware of this change in the perception of their condition and tend passively to accept stigmas that should belong to the past. Furthermore, for a number of reasons, opportunities for people with diabetes are not equally distributed and there are still sections of the world’s population who cannot take advantage of available opportunities. The issue of discrimination for people living with diabetes continues to thrive not only in developing countries but also in the more affluent.

The violation of human and social rights of people with diabetes is widespread starting from the most basic right to survival, jeopardized by the lack of availability of insulin, to the more sophisticated such as health insurance restrictions and discrimination at work. The violation of human and social rights of people with diabetes is widespread starting from the most basic right to survival, jeopardized by the lack of availability of insulin, to the more sophisticated such as health insurance restrictions and discrimination at work.1 Moreover, the increasing cost to guarantee the full implementation of models of care able to prevent acute and chronic complications and to secure an appropriate quality of life to people with diabetes is widely considered a burden for the society and not as an appropriate investment able to

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Diabetes in society

both save resources in the long run and to make life better for those affected. Although an increasing number of declarations, resolutions and laws at international and national levels are aimed at protecting the human and social rights of the population in general, with some specifically targeted to people with diabetes, their implementation

1 OUT OF 5

PEOPLE WITH DIABETES FEEL DISCRIMINATED AGAINST DUE TO THEIR CONDITION

22%

OF FAMILY MEMBERS BELIEVE THAT PEOPLE WITH DIABETES EXPERIENCE DISCRIMINATION

is not homogeneous and discrimination is still broadly diffused and, what is worse, may not even be fully perceived by affected individuals.2

aware of instances in which their rights have been violated. In this context the DAWN2 study3 offers a relevant contribution for the better understanding of the dynamics of discrimination against people with diabetes taking advantage of their views in a wide range of geographical areas. According to the results of the DAWN2 study, a significant number of people with diabetes feels discriminated against with a noticeable variation in this regard ranging from 11% to 28% in different countries (see Figure 1). A common factor is that such a perception is significantly more frequent among people with diabetes treated with insulin. People with diabetes who felt themselves discriminated against expressed more problems living with diabetes, less perceived support and a reduced sense of well-being but a higher level of empowerment (Table 1).4

According to the results of the DAWN2 study, a significant number of people with diabetes feel discriminated against with a noticeable variation in this regard ranging from 11% to 28% in different countries. For all these reasons there is a strong need to identify the areas in which discrimination occurs, to make these widely known in order to change the still prevailing cultural beliefs about diabetes, to put pressure on those who should guarantee individuals’ human and social rights, and, most important, to help people with diabetes become more fully

The perception of being discriminated against is associated, wherever it occurs, with a highly negative impact on

33% ONE IN THREE HEALTHCARE PROFESSIONALS BELIEVE THAT DISCRIMINATION IS A SOCIETAL ISSUE BUILDING SUPPORTIVE COMMUNITIES TO HELP OVERCOME DISCRIMINATION IS A SHARED RESPONSIBILITY

Figure 1: Country differences in the proportion of discrimination against people with diabetes. 50% 40% 30% 20%

Algeria

India

Turkey

Poland

Netherlands

Italy

China

France

Spain

Russian Fed.

Canada

Japan

Mexico

Germany

APROM ID#: 5590. Date of approval: September – 2013

Denmark

0% TOGETHER WE CAN STOP DISCRIMINATION BY INCREASING PUBLIC ADVOCACY AND AWARENESS ABOUT THE REALITY OF LIVING WITH DIABETES

10%

For more information on building supportive communities for people with diabetes, visit www.dawnstudy.com

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December 2013 • Volume 58 • Special Issue 2

Diabetes in society

relationships with family, friends or peers and on work or studies, their financial situation and psychological well-being (Tables 2 and Figure 2).4

of the diverse environmental and cultural backgrounds of the studied populations. From the existing literature5 and from the results of the DAWN2 study still to be fully interpreted, the actual level of discrimination might be even higher than the already significant one already reported since subtle or more sophisticated discriminatory attitudes might be considered a normal component of the

The complexity of the topic and the difficulties in identifying the cause and effect hierarchy of the results call for further work to be done to provide a better explanation of the findings. This should be based on an in-depth analysis

Table 1: C omparison of those who reported discrimination versus those who did not.

PAID DES Perceived support WHO-5 well being **p < 0.0001 Mean = estimated mean

Discrimination mean s.e. 43.6 2.2 46.1 2.0 53.5 1.5 58.8 2.1 s.e. = standard error s.d. = standard deviation

No discrimination Overall s.d. mean s.e. 31.2 2.2 25.5** 36.5 1.9 21.4** 58.5 1.4 23.0** 60.4 2.1 23.3**

*p < 0.0005

OR 1.99 1.76 1.67 1.44 1.42 1.19

P value * * * * * *

OR = odds ratio

Figure 2: P ercentages of people with diabetes reporting negative impacts on various life domains according to whether or not they reported discrimination. Emotional well-being*

49%

Financial situation**

48%

Leisure activities**

43%

Work or studies**

43%

Relationship with family, friends or peers** *p = 0.0005

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30%

44% 39% 35% 29% 17%

One encouraging result of an acknowledgement of both diabetes discrimination and the need to change belief patterns would be that in cases where those who felt themselves discriminated against expressed a higher level of empowerment would possibly indicate that empowerment represents a fundamental instrument leading to growing awareness both among people with diabetes and the general population about the existing unacceptable discrimination. Only with continued awareness and discussion can the diabetes community strengthen the cultural evolution required for needed behaviour changes and regulatory interventions.

PAID = Problem Areas in Diabetes DES = Diabetes Empowerment Scale

Table 2: L ikelihood of variables with negative impact in people with diabetes who expressed feelings of discrimination. … r elationship with family, friends or peers … work or studies … quality of life … financial situation … leisure activities … psychosocial well being

prevailing local culture and not even perceived as violations of human and social rights.

reported discrimination did not report discrimination

Massimo Massi Benedetti Massimo Massi Benedetti is President of the Hub for International health ReSearch, Perugia, Italy.

References 1. M assi Benedetti M, Calabrese G, Cesarini A. Diabetic Life Problems: Social Rights. In Alberti KGMM, Zimmet P, De Fronzo RA, et al (Eds). International Textbook of Diabetes Mellitus, Second Edition. John Wiley & Sons Ltd. Chichester, 1997. 2. Di Iorio CT, Carinci F, Massi Benedetti M. The Diabetes Challenge: from Human and Social Rights to the Empowerment of People with Diabetes. In Ferrannini E, Zimmet P, DeFronzo RA, et al (Eds). International Textbook of Diabetes Mellitus, Fourth Edition. In press. 3. Peyrot M, Burns KK, Davies M, et al. Diabetes Attitudes, Wishes and Needs 2 (DAWN2™): a multinational, multi-stakeholder study of psychosocial issues in diabetes and person-centred diabetes care. Diabetes Res Clin Pract 2013; 99: 174-84. 4. Wens J, Nicolucci A, Kalra S, et al. on behalf of the DAWN2 Study Group. Societal discrimination and emotional well-being in people with diabetes: results from DAWN2. Abstract 1142. EASD, 2013. 5. Schabert J, Browne JL, Mosely K et al. Social stigma in diabetes: a framework to understand a growing problem for an increasing epidemic. Patient 2013; 6: 1-10.

**p < 0.0001

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Diabetes in society

Diabetes voices: one con Diabetes voices in Canada: mana tasks and conflicts with health

Earlier in 2013, Diabetes Voice initiated a regular column featuring a variety of people in different parts of the world expressing their thoughts about living with diabetes. In consideration of the DAWN2TM study, we have broadened the circle to also include the perspective of a family member of a person living with diabetes and a health professional directly involved in diabetes psychological care in Canada and Russia. In China, we hear from David, diagnosed with type 2 diabetes in 2003, and his wife about life in a region defined by ambition and expansion against concerns about the diabetes epidemic and access to healthcare.

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Joanne Graham, who lives with type 1 diabetes, her sister and her psychologist give us a rare look at the three perspectives of one condition and one goal: the challenge associated with optimal diabetes self-management and the relationship between successful outcomes and emotional support.

never-ending need to test my blood sugar and stab myself with needles. I resent every part of it and avoid it whenever possible. By avoiding my condition, I have gotten progressively sicker. I won’t bore you with the details, and to be honest I don’t want to see them written down.

‘ I often have conflicts with my healthcare professionals who label me “non-compliant”.’

Living with type 1 diabetes: Joanne Graham ‘My name is Joanne and I’m 36, single and fortunate enough to be a stay-at-home mother of three great children (14, 10 and 7 years) who are the main focus of my life. I am bright and outgoing, rarely shy and often called the “life of the party”. I am a great friend, can host a party at a moment’s notice and have fun in most situations. I am physically fit enough to participate in any sport, and I love to sail. I’ll try just about anything, at least once!

I often have conflicts with my healthcare professionals who label me “noncompliant”. I struggle with completing and passing the diabetes tests they’ve deemed necessary for me to qualify for an insulin pump and Continuous Glucose Monitoring (CGM) system. I feel both these devices would make a huge change in the way I manage my diabetes. Yet, I can’t fit into their box, so the medical rules and guidelines about diabetes care take priority over the patient.

Well actually let me rephrase that, I used to be all of these things. After being diagnosed with type 1 diabetes six years ago, my life has taken a drastic turn. I am not cut out to be living with diabetes! The rules, the planning, the list taking, the carbohydrate counting, and my biggest challenge: the

For me, and maybe for others living with this condition, diabetes is pushed to the back burner overshadowed by guilt and depression. Without overcoming these issues it will always be a struggle to prioritize diabetes self-management and I will get sicker without help.’

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Diabetes in society

dition, three perspectives ging distress related to self-management care professionals Joanne’s sister: KariEllen Graham ‘My sister Joanne was diagnosed with diabetes about seven years ago. Diabetes is without question, a very challenging disease and can have devastating consequences if not managed properly. Unfortunately, Joanne also suffers from an avoidance disorder that compromises her diabetes self-management. Joanne is intelligent and understands the complex treatment guidelines for the best management of diabetes, however, she is unable to put these into practice: she does not exercise, eat well, nor does she take her medications regularly. On its own, diabetes is a frustrating condition, but mental health disorders intertwined with diabetes are exceptionally difficult to manage and to witness. I am trying to understand Joanne’s mental health issues but find it frustrating when just last week, for example: she cleaned her house, bought party supplies, and threw a huge birthday party but she cannot manage to print out a simple report to get an insulin pump from her insurance company. She already bypassed the usual medical “hoops” for obtaining an insulin pump but now she wants to sidestep this simple insurance requirement as well.

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I wish there was something more I could do for my sister but I have learned a few things since her diagnosis: constant harping on her does not work, attending counselling sessions with her does not work, positive reinforcement does not work and finally informing her about our family’s concern and anxiety over her poor medical condition does not work. I am frustrated with her avoidance disorder and the impact it has on her ability for diabetes self-management. I am afraid of something serious happening to Joanne and wish I knew what else I could do.’ Joanne’s clinical psychologist: Dr. Michael Vallis ‘In writing this perspective on Joanne’s on-going efforts to manage her diabetes, I find myself in an interesting place. As one of a small group of psychologists in Canada who specialize in the treatment of diabetes I see the value of the psychological examination of both personal and historical barriers as they impact directly on vigilance of blood glucose levels and regular insulin administration. I see how challenging it is to sift through emotional baggage at a pace that does not quickly result in improved control but holds promise. I also see how we (the diabetes team and medical system) contribute to

distress and self-management challenges. Joanne is sensitive to judgment; it elicits avoidance, which elicits more judgment. Her experience of diabetes management services is that she is told how poorly she is doing, and is repeatedly lectured about the importance of carb counting and insulin adherence. The result? More avoidance. Then she sees a possible aid – the insulin pump. Without assuming success she thinks this may be a feasible solution. Our reaction? We outline all of the requirements we have for her to meet. Unwittingly, we give her another test to pass. Balancing clinical practice guidelines with patient empowerment remains elusive.’

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Diabetes voices in Russia: despite a lack of support and resources, actively striving to achieve dreams Dmitry Pustovitov is a very enthusiastic student and advocate for type 1 diabetes in his community in Russia. His good attitude and outlook about living with diabetes since the age of five years has been a great help to him and his health. His mother and doctor applaud his efforts and want him to succeed. They all hope for more diabetes support and resources for Dmitry so his future remains bright.

Living with type 1 diabetes: Dmitry Pustovitov ‘Hi! I am Dmitry Pustovitov. I am living in Orenburg state, Russia where I am a student of Orenburg State Pedagogical University. I am living with diabetes for 18 years, since 1995. My diabetes has always been under good control without visible complications and I spend a lot of time directing my diabetes to be what I consider in a good condition. I also spend two hours a day taking sport exercises such as aerobic exercise for hands and chest, pull-ups, press-ups and exercises on a parallel bars. Also since 2004, I was diagnosed with another serious disease – multiple sclerosis and magnetic resonance images show that my brain is damaged. My HbA1c on 11 June 2013 was 9.3%. This summer I was the happiest person on this planet because I took part in youth camp

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in Tirrenia, Italy organized with the help of the International Diabetes Federation (IDF). At camp I was able to listen to the information about the latest discoveries in the world of diabetes. I hope for further support for my diabetes in the future.’ Dmitry’s mother: Tomina Natalia Leonidovna ‘Hail to all of you! My son is Dmitry Pustovitov. His diabetes was diagnosed in 1995. The first year was the hardest year in my life. I had to learn by heart lots of special literature on diet, cookery and psychology. The main task for me was to help my son organize a healthy and active lifestyle, look after his growing and development in life, and follow his blood glucose and correct it in rough situations. When I taught my son to live with diabetes I stopped trying to control it. I am very glad for him; he follows his dream and has found success. He gets a lot of positive emotions.’ Dmitry’s endocrinologist: Flura Uralovna Sultangarieva, Orenburg Regional Clinical Hospital № 2 ‘Mr. Dmitry Vyacheslavovich Pustovitov, who was born on 9 April 1990, was in hospital from 14 – 22 of August and was examined in Gazprom’s Hospital N°2.

Today, he uses pens for administration. One is prolonged – Lantus at 24 units a day and short-acting Insulin – Humalog, 7 to 10 units for a meal. Dmitry manages his diabetes well. Nowadays he has some difficulties with feeling hypoglycaemic episodes and does so only by the help of mood changes. He needs to measure his glucose level 5 – 7 times/day. Unfortunately, Dmitry’s diabetes complications progress and he has diabetic complications on his kidneys.

‘ Unfortunately, Dmitry’s diabetes complications progress and he has diabetic complications on his kidneys.’ Dmitry really needs the help of an insulin pump for the better behaviour of diabetes management and for getting rid of diabetic complications. Also, Dmitry was a volunteer in Orenburg’s camps for children with diabetes. He showed us that he wants and can get through the complications in his life. He likes not to just live his own life, but to help other people with diabetes to live, too.’

Dmitry has lived with 18 years of type 1 diabetes experience and since he was 5 years old he has been injecting insulin.

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Diabetes voices in China: filling the diabetes information and care gap with the Internet

Diagnosed ten years ago, David Xiong learned most of what he believed he needed to know about diabetes on the Internet and in books. It’s no surprise then that David also fulfilled his need for support by utilising social media and online communities to create a network of friends with diabetes across China and beyond.

Living with type 2 diabetes: David Xiong ‘I found out about my diabetes in December 2003 when a doctor at a company annual physical examination told me my fasting blood sugar result was 12 mmol/l. I couldn’t accept it at first, and I had another test with a high result but did nothing. At that time I was 24 years and I just graduated from university although I had been working in Beijing for about two years. More than one week passed before I decided to visit the China-Japan Friendship Hospital – a modern, high-ranking hospital. After a series of examinations related to diabetes, a young doctor told me for the third time I have diabetes – type 2 diabetes – and suggested I use 30 units of regular insulin twice daily. I was 170 cm tall and weighed 60 kg at that time. I was born and grew up in a small rural village of Hubei province in the middle of China, south of Beijing. I never had the opportunity to leave my village before I went to a college. Even before my diagnosis, I think I was living with diabetes because I found it was easy to sleep after a meal. After my diagnosis, I learned that this is a phenomenon of postprandial hyperglycaemia, but at college I had no idea about diabetes. My diabetes knowledge came mostly from the Internet, but I also bought some books. This helped me learn a lot about

December 2013 • Volume 58 • Special Issue 2

diabetes and how to adapt to a healthy lifestyle. Today, I have four insulin injections – three fast-acting insulin injections after each meal and one long-acting insulin before sleep. Today, I pay more attention to each meal and eat less high fat food and almost no sweet drinks. I also do more exercise than before my diagnosis, including climbing and sometimes playing basketball. Most of my workmates don’t know I live with type 2 diabetes, but I work just as hard and finish my job just as well as other people.

‘ In real life it is difficult to know other young people living with diabetes, but from the Internet, I have made a lot of young friends with diabetes all around China.’ In real life it is difficult to know other young people living with diabetes, but from the Internet, I have made a lot of young friends with diabetes all around China – some live in Beijing, but most live in other Chinese cities or outside of China. We meet each other when I travel to another city or if they come to Beijing. Sometimes we choose a city and plan a party. Along with me, almost 20 people living with diabetes and their families organised a meeting in Beijing, September 2013. The 1st of November is my daughter’s first birthday. She is so lovely and has learned to say “daddy” and “mummy”. My wife married me even though she knew I have diabetes, but she did not tell her parents because she was worried about their opposition to our marriage because of my diabetes. My wife knows a lot about diabetes and encourages me to do exercise and eat food that is helpful for my condition. I work hard to raise my family, and when I am free, play with my little daughter. My life will go on and diabetes is part of my life.’

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David’s wife: Lan Feifei ‘When I met David, he had lived with diabetes for two years. I already knew about diabetes because before we met I had a friend who lived with type 1 diabetes for nearly twenty years. I understood a little about diabetes mellitus at that time; for example, I knew it was sometimes called “DM”, and how people who live with diabetes need to be careful about what they eat and need to do exercise to control their blood glucose levels. I also learned that people with diabetes are required to monitor their blood glucose every day. It sounded very troublesome back then.

‘ Diabetes complications are a real threat to us.’ David and I were married seven years ago and if you ask me if “DM” influences our life together then I will answer yes. We eat less salt and oil, and we eat more vegetables and whole grains. We do more exercise. We use correct diabetes information to influence people around us. These things are the upside of

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life with diabetes. I have to admit, my husband’s resistance to infection is lower than healthy people, and therefore diabetes complications are a real threat to us. We need to give special attention to his health. One friend remarked to me that “DM” is just a kind of lifestyle. We meet it, face it and enjoy life.’ David’s medical care: David talks about his diabetes care in Beijing.

‘I have no steady doctor – maybe the doctor will ask about my blood sugar, maybe not.’ ‘I have no steady doctor. Doctors here have many patients and they can’t remember each one, so it is difficult to find a health professional to submit a written piece about me. What I typically do when I have an appointment is tell the doctor I need several vials of insulin and ask for a written prescription. Maybe the doctor will ask me about my blood sugar level, maybe not.’

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YLD: Changing public attitudes and fighting for rights Elizabeth Snouffer and IDF Young Leaders in Diabetes

Results of DAWN2TM have given the diabetes community, including young adults who live with diabetes, strong evidence that managing type 1 and type 2 diabetes comes with a financial, social and emotional burden that affects families, too. Finally recognition has been given to the distress associated with diabetes selfmanagement and how little to no support can lead to frustration, adverse events, and even depression or other complications. We have asked three members of IDF Young Leaders in Diabetes Programme (YLD), who also represent corresponding DAWN2 study countries (although none of them participated in DAWN2), to weigh in on the reality of life with diabetes and how increased diabetes awareness, support and resources will help children and young adults live more fully functional lives with diabetes.

December 2013 • Volume 58 • Special Issue 2

Jan Twachtmann was diagnosed with type 1 diabetes at the age of 14 years in Bremen, Germany. Jan, an IDF Young Leader in Germany, has a Masters degree in Law and believes that, because young people with diabetes are not a part of decision-making, ‘we have to fight for our wishes and rights to be considered.’ He would like to create a National Young Leaders board to work on strategies that will help support young people with diabetes. Jan has witnessed the problems first-hand, ‘Many teachers are fearful of the legal implications connected to young people who need to test blood glucose or inject

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Diabetes in society

Jan Twachtmann, IDF Young Leader in Diabetes, Germany (first row, third from the left)

insulin in class. These legal fears can lead to discrimination.’ Realizing how studies such as DAWN help identify the burden of diabetes more clearly, Jan is hopeful the research

will help influence politicians, because ‘it’s easier to demand solutions for diabetes problems we cannot solve alone.’ Jan’s message is clear: ‘I don’t want to live for my diabetes, but I do want to live with my diabetes.’

‘ I don’t want to live for my diabetes, but I do want to live with my diabetes.’ 60

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Annelieke Overbeeke one of the IDF Young Leaders in the Netherlands was diagnosed in 2002 just before her eleventh birthday. Today at 21 years, she is studying nutrition and health and is founder of the youth organization, DIA-B or Dutch Insulin Activities – Buzz. DAWN2 has helped Annelieke shed some light on her own feelings related to sharing the burden of diabetes with family and friends and feels the impact of diabetes on their lives is immense. ‘Recently I moved in with my boyfriend and my diabetes automatically comes with it. I feel guilty for burdening him.’ Annelieke would like to see

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Diabetes in society

development of a joint programme for people living with the condition, and people connected to the life of a person with diabetes to help families develop coping strategies together.

‘Recently I moved in with my boyfriend and my diabetes automatically comes with it. I feel guilty for burdening him.’

Annelieke Overbeeke, IDF Young Leader in Diabetes, the Netherlands (first row, second from the left)

Worlds away in India, Binit Gandhi was diagnosed with type 1 diabetes at age 22 years in 2009. Today, he lives and works in Rajkot, the fourth largest city in Gujarat, Western India. This December, Binit will join the IDF Young Leaders in Diabetes at the World Diabetes Congress in Melbourne.

‘ Parents often stop their children from going to school when they become diagnosed with diabetes and the child with diabetes gets scorned for being a financial burden.’ Binit understands how difficult diabetes is for people who live with the condition in rural India. ‘People here have very negligible knowledge about diabetes, its adverse effects and how to control it.’ He is dedicated to the idea of helping to spread awareness not only to the youth of India but also the general population. ‘Parents often stop their children from going to school when they become diagnosed with diabetes and the child with diabetes gets

December 2013 • Volume 58 • Special Issue 2

Binit Gandhi, IDF Young Leader in Diabetes, India

scorned for being a financial burden.’ He believes the stigma of diabetes is the cause of great distress and feels people with diabetes are treated poorly just for having the condition. ‘The blame-thepatient attitude has undermined efforts to give people the best diabetes care.’ Binit hopes to help change that.

Elizabeth Snouffer Elizabeth Snouffer is Editor of Diabetes Voice. To watch Jan, Annelieke and Binit discuss their own diabetes attitudes, wishes and needs on camera, please visit the following link: http:// youngleaders.idf.org/videos

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VOIce BOX

The Diabetes Voice Inbox Voice Box in this issue contains a selection of readers’ comments recently received. The first specifically relates to an article in our previous issue. The others are general comments about Diabetes Voice – mostly complimentary, some constructively critical.

In the June 2013 issue of Diabetes Voice, Dr. Kaushik Ramaiya wrote that insulin pump therapy for children with type 1 diabetes in developing countries is a ‘distant dream’. With all due respect to the good doctor, I believe that that is a wholly unrealistic observation. Here in Ghana, the majority of children lucky enough to be diagnosed with type 1 diabetes (and I write that in earnest because far too many children here are tragically undiagnosed or misdiagnosed) don’t have a choice. To read Barbara Zigah’s entire letter, visit www.idf.org/voice-box

Barbara Zigah, parent of a child with type 1 diabetes (Ghana)

Diabetes Voice (September 2013) has a good general interest mix with attractive graphics and easy layout. Everyone likes an inspirational struggle story, and what distinguished ‘Voices of type 1 diabetes’ is a larger scope of societies included, many outside the US and the developed world. Lack of access to supplies in places such as Maldives is startling to this American. However, I am not sure of the wisdom of publishing Joyce Yi-Frazier’s article on BG testing frequency stripped of authors, aims, methods, results and conclusions. These may be available at Elsevier’s website, but after a 5 minutes search I found them at PubMed. The discussion section of an

I am interested in receiving the magazine because since a year ago my five-year-old has diabetes. I want to be constantly updated and educated about everything related to diabetes. Many thanks!

academic paper is not sufficient to understand the paper. Another highlight for me was the use of advanced technology to help children with diabetes control, a look into

Mariana (Argentina)

the future for all of us.

I don’t have anyone with diabetes in

Scott King, President, Islet Sheet Medical (USA)

my family but in the clinic where I work we have many patients with the disease and the condition is linked to The information includ-

periodontal disease. For this reason it

I would love to receive the issues of this maga-

ed in the magazine is very

is important for me to be informed.

zine. I am from Venezuela and I would like to

helpful for people with

Thank you.

help people with diabetes and for this reason

diabetes and their fami-

I want to learn more about it. The work done

lies. Besides it is always a

by IDF is extraordinary, congratulations.

way of being updated on

I look forward to receiving the magazine soon!

the subject.

Josaura (Venezuela)

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Charo (Spain)

Prof. Hernandez (Mexico)

December 2013 • Volume 58 • Special Issue 2

ZANDILE SIGNORIA MZAYIFANI Zandile has type 2 diabetes

diabetes is changing the world – how can we change diabetes?

Learn more about how we are changing diabetes at novonordisk.com Follow us on

1. International Diabetes Federation. IDF Diabetes Atlas, sixth edition, 2013.

Changing Diabetes® and the Apis bull logo are registered trademarks of Novo Nordisk A/S

To tackle the diabetes pandemic, we need global action. Today, Zandile is one of 382 million people living with diabetes.1 Unless things change, by 2035, she could be one of 592 million.1 Through our Changing Diabetes® programmes and partnerships, we are pushing diabetes to the top of health agendas around the world and advocating for practical solutions that will set change in motion.

VERÓNICA RUBIO FRANCO WITH HER DAUGHTER MONICA ROMAN RUBIO Verónica had gestational diabetes and now has type 2 diabetes

how can we change what we do not understand? Learn more about DAWN2™ at dawnstudy.com Follow us on

Changing Diabetes® and the Apis bull logo are registered trademarks of Novo Nordisk A/S

We can start by listening to families like Verónica’s. A study of more than 15,000 people across 17 countries, DAWN2™ helps us understand the attitudes, wishes and needs of people with diabetes and their families.