Children with diabetes: Protecting our future - Global perspectives on diabetes
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SPECIAL ISS U E Global perspectives on diabetes Volume 58 – September 2013 Children with diabetes: Protecting our future
Contents Diabetes Views 4 International Diabetes Federation Promoting diabetes care, prevention and a cure worldwide News in Brief 6 Diabetes Voice is published quarterly and is freely available T H E G LOBAL CA M PAI G N online at www.diabetesvoice.org. My sweet family 10 This publication is also available in French and Spanish. Aishath Shiruhana and Aminath Abdul Rahman The production of this Special Issue has been made possible Protecting kids' rights: IDF and select partners launch Kids and thanks to the support of Sanofi Diabetes. Diabetes in Schools (KIDS) project in Brazil and India 13 Anne Belton and Bénédicte Pansier Editor-in-Chief: Rhys Williams In the spirit of patient centeredness 16 Managing Editor: Isabella Platon, isabella.platon@idf.org Angus Forbes Editor: Elizabeth Snouffer Advisory group: Pablo Aschner (Colombia), Ruth Colagiuri Prioritising diabetes on the global agenda 19 (Australia), Maha Taysir Barakat (United Arab Emirates), Linong Ji Viswanathan Mohan (India), João Valente Nabais (Portugal), National programme in Turkey: Diabetes at School 21 Kaushik Ramaiya (Tanzania), Carolyn Robertson (USA). Şükrü Hatun and Şeyda Özcan Layout and printing: Ex Nihilo, Belgium, www.exnihilo.be h e a lt h d e l i v e r y All correspondence and advertising enquiries should be addressed to the Managing Editor: The role of diabetes technology in children and youth: International Diabetes Federation, Chaussée de La Hulpe 166, getting connected for better control 24 1170 Brussels, Belgium Francine R. Kaufman Phone: +32-2-5431626 – Fax: +32-2-5385114 – isabella.platon@idf.org Taming the diabetes monster 28 Elizabeth Snouffer Children and diabetes: success and challenge © International Diabetes Federation, 2013 – All rights reserved. No part of this publication may be reproduced or transmitted in the developing world 31 in any form or by any means without the written prior permis- Graham Ogle, Angie Middlehurst and Robyn Short-Hobbs sion of the International Diabetes Federation (IDF). Requests to reproduce or translate IDF publications should be addressed CLINICAL CARE to the IDF Communications Unit, Chaussée de La Hulpe 166, B-1170 Brussels, by fax +32-2-5385114, or by e-mail Debate – Insulin therapy: a matter of choice? 34 at communications@idf.org. Psychological challenges for children living with diabetes 38 Diana Naranjo and Korey Hood 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 Caregiver reports of provider recommended frequency of are those of their authors, and do not necessarily represent the views blood glucose monitoring and actual testing frequency for youth 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 with type 1 diabetes 41 link to third-party websites, which are not under IDF’s control. Joyce P. Yi-Frazier and colleagues for the SEARCH for Diabetes in The inclusion of such links does not imply a recommendation or Youth Study Group 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 DIABETES IN SOCIETY any products or services advertised there. While some information in Diabetes Voice is about medical issues, it is not medical advice and Encouraging healthy futures for Brazil’s children 48 should not be construed as such. ADJ - Associação de Diabetes Juvenil ISSN: 1437-4064 Voices of type 1 diabetes: taking type 1 diabetes to school 53 Cover photo : © GlobalStock | istockphoto.com VOICE BO X 58 September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 3
Diabetes views No More Excuses It always seems impossible, until it is done. – Nelson Mandela These words first uttered by Nelson Mandela seem particularly appropriate Today, under the leadership of Graham Ogle, IDFs Life for a Child (LFAC) and current for what is most critical to the status of diabetes care in the Programme helps 11,200 children and youth in 43 countries and provides world today, especially concerning human rights and survival. Mandela’s them with essential care including insulin, test strips, and expert diabetes words reflect the pressure most nations, governments and municipalities education. However, it is estimated that 80-100,000 children and youth must accept in order to improve the current state of care for all people around the world are still in urgent need of assistance. living with type 1 or type 2 diabetes worldwide – especially children. With cautious optimism, and with the largest coalition of diabetes advocates In 2011, IDF developed the first ever International Charter of Rights and behind us we must be ready to fight for and protect the fundamental Responsibilities of People with Diabetes providing fundamental guidelines rights of each and every child living with diabetes. It may seem impossible for the rights of more than 371 million people living with diabetes. This today, but it must get done. landmark document places the rights of people with diabetes, their parents and carers into three focus areas: the rights to care; information There was a time when it seemed impossible to save the lives of children and education and social justice, whilst at the same time acknowledging suffering from diabetes, that is until Drs. Frederick Banting and Charles the responsibilities held by people with diabetes. Best, mentored by Professor Macleod and assisted by James Collip, discovered insulin in 1921. The first child successfully treated with The Charter aims to bridge the gap in the quality of care as well as customs insulin took place in 1922 at Toronto General Hospital. Dr. Banting and practice that impact the health of people with diabetes in many ways. injected 14-year-old Leonard Thompson, a ‘charity patient,’ with the But there is so much more we need to get done for the promise of a healthy hormone insulin and Leonard survived, as so many children have done future for the child living with diabetes. ever since. However, it also must be pointed out that even today many children do not thrive, and many die within weeks of diagnosis, if they Children must have a voice. In order to have an understanding of their are even diagnosed at all. health requirements, our youth must be able to communicate their needs and explain what aspect of diabetes is troubling them most so they can We must ask ourselves again and again how can it be that we live in a world begin to live healthy lives with the promise of a future. For this reason where type 1 diabetes is still considered a death sentence, even though a psychosocial counselling and care is key for the child who is not meeting life-saving treatment was discovered nearly a century ago? targets. This aspect may be especially apparent in adolescence and young adult life well into the mid-twenties. Communication between doctor In 2006, landmark UN Resolution 61/225 was the first step toward and patient, counsellor and patient and parent or carer brings to mind advancing the rights of people affected by type 1 and type 2 diabetes. the triangle of care. As a child develops into a young adult it is important Resolution 61 validated the debilitating and costly nature of diabetes. that the right transitional care is chosen. We know that young adults and adolescent children are more susceptible to complications. We cannot Tragically, within one year of Resolution 61, nearly 5000 children still overlook the importance of teaching children living with diabetes to fight died from diabetes mellitus worldwide (WHO Global Burden of Death, their condition and overcome perceived barriers. We must teach them to be 2008). Even this shameful statistic is a probable inaccuracy due to under- masters of the disease rather than its servant, but only with adequate care reporting, misdiagnosis and guilt. What is not alluded to in Resolution 61 and access to life-saving medicines can we begin to show them the way. is the multitude of children, from low- and middle-income countries, who develop diabetes and find themselves very much alone. Many of these No child should die of diabetes, and we must ensure this gets done. children suffering with poorly treated diabetes are too afraid to reveal their condition to teachers or schoolmates and many won’t be afforded the same opportunities for career or life. The undiagnosed and neglected child who develops diabetes will not be satisfactorily cared for and now we know that care in the beginning is key to diminishing the risk for complications later in life. Most tragically of all, the child who develops type 1 diabetes, but who also lives in poverty, will die within 2 weeks without insulin. It is time that we ensure that medical standards for all children suffering with type 1 diabetes are met. It is time the provision of insulin is made accessible to all who might need it – but especially children. Michael Hirst No more excuses. President, International Diabetes Federation 4 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
Diabetes views Children and Oft-repeated statements about our children, though they have become clichés, are nevertheless adolescents absolutely true. Our children are our future. They are our most precious resource. Their welfare is one of the few things that everyone in the world would agree is worth striving for. Politics, religions and customs still, unfortunately and sometimes tragically, divide us but the welfare of our children is one of the concerns that unites us Our most precious resource – without any question whatsoever. The theme of this issue of Diabetes Both studies are from the USA. The question of feasibility must be much Voice is diabetes in children and adolescents. Unless we focus on this more marked in low-resource environments. theme - and act - the welfare of our children and adolescents who have diabetes – either type 1 or type 2 – will suffer. If we let that happen, Another recent Diabetologia article (Lind, et al, available on-line) is the how will we explain our failing to them now and when they are adults? demonstration that, at least in Canada and the UK, prospects seem to be improving in terms of mortality outcomes for people with diabetes I was pleased to see, in a recent issue of Diabetologia, the paper by compared with people without diabetes of the same age. Overall, the Persson and colleagues dealing with the impact of childhood-onset excess mortality of people with diabetes has fallen from about twice that type 1 diabetes on schooling – educational achievement at the end of of people without diabetes in 1996 to around one-and-a-half times in compulsory education and the end of upper secondary education – and 2009. This is still not satisfactory but it is a trend in the right direction. on employment status later in life. As someone who has, from time to The authors speculate that this fall is ‘in part due to earlier detection time, contributed to the literature on the individual and societal costs and higher prevalence of early diabetes, as well as to improvements in of diabetes, I have often thought that the ‘cost’ (in the widest sense) diabetes care’. It’s too early to unfurl the flags and sound the trumpets yet of diabetes on the education of children was virtually unrecorded. In since we need data like these from other countries but it is encouraging contrast, the monetary cost of diabetes to the individual and family and to feel that the prospects for our children may be better in the future the cost to society of lost production of adults with diabetes have both than they were in the past. been intensely studied. That study, from Sweden, found that the presence of diabetes had an adverse effect on children’s final grades and that those On the last page of this issue is a new feature – Voice Box – the Diabetes who had diabetes as children were less likely to be ‘gainfully employed’ Voice Inbox. Your comments on our publication are invited – via at the age of 29. As was highlighted in a commentary on the paper in diabetesvoice@idf.org. Please keep them coming in. We are aiming for the same issue of the journal, the effects found were small in magnitude this magazine to be interactive as well as active. but their magnitude is likely to be very dependent on the nature of the support given to children in any particular school system. Thus, though small in Sweden, the effects may be much larger elsewhere. My hunch would be that they are. The first of the selection of articles in the ‘Currently in Diabetes Research and Clinical Practice’ section of News in Brief in this issue is specifically about children. It’s a study which asks the question: do attitudes to blood glucose monitoring of children with type 1 diabetes have an impact on family harmony? The short answer is: yes, they do. Further on in this issue is an article, originally published in the same journal, about a different aspect of the same topic: to what extent are the recommendations of children’s care providers (i.e. diabetologists and diabetes specialist nurses in the main) about the frequency of self monitoring of blood glucose actually carried out in practice? Authoritative guidelines on the monitoring of blood glucose in type 1 diabetes are demanding – four or more tests per day in most instances. This has a cost – financial (either to the health system or to the family, depending on circumstances), practical (in terms of the time and facilities needed to carry them out) and emotional (in terms, for example, of the Rhys Williams is Emeritus Professor of constant reinforcing of being ‘different’ from everyone else who don’t need to do this). Both studies have approached, from different perspectives, the Clinical Epidemiology at Swansea University, multi-faceted question of the feasibility of adhering to these guidelines. UK, and Editor-in-Chief of Diabetes Voice. September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 5
News in brief World Diabetes Day 2013 campaign: protecting our future one step at a time ‘Take a Step for Diabetes,’ the World Diabetes Day 2013 cam- The 60-second PSA, produced by the IDF, promotes the paign, encourages people worldwide to participate directly importance of staying healthy to help reduce complications in the drive for improved diabetes awareness by stepping up associated with diabetes, such as amputation, blindness and or accounting for any physical or diabetes related activity. heart disease. The ‘Take a Step for Diabetes’ online platform is rapidly The PSA can be viewed at http://bit.ly/1bKJauI accumulating millions of step donations collected through various individual and group activities. One step equates to How much do you know about diabetes? Are you interested any activity that advances awareness, improves the lives of in helping raise awareness or becoming a diabetes advocate people with diabetes, promotes a healthy lifestyle or reduces in your area? All this information and more is available in the the risk of developing diabetes. In recognition of the cur- World Diabetes Day online toolkit, displayed in a user-friendly rent number of people living with diabetes, ‘Take a Step for format and tailored to different target groups including the Diabetes’ hopes to achieve 371 million steps by the start of general public, people with diabetes, children and youth, and the IDF World Diabetes Congress in Melbourne, December health professionals. 2013. Over 200 million steps have been submitted so far. The toolkit is available at www.idf.org/worlddiabetesday Find out how you can take part at http://steps.worlddiabe- tesday.org. Every step forward is a step toward advancing diabetes care, prevention and a cure worldwide. Help us change diabetes one step at a time! The World Diabetes Day campaign also features a pub- lic service announcement (PSA) produced to inform and educate people about the life-threatening nature of diabetes. 6 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
News in brief DAFI: Diabetes Africa Foot Initiative DAFI – the innovative multistakeholder were supported by the project to attend Diabetes Foot Initiative in Africa – has foot screening and care training at the taken a great stride forward in recent University of Johannesburg in the middle weeks. of July. There they participated in lectures and workshops developed by the South DIABETES The project led by IDF and its Africa Region, in collaboration with the African university and Egypt’s Université Senghor designed to lead to certification AFRICA University of Johannesburg, Université Senghor, UNFM, Sanofi Diabetes and ten as Diabetes Foot Care Assistants. FOOT healthcare centers in Africa, is now well When they return to their centres in INITIATIVE underway. Specialist training of health Cameroon, Ghana, Guinea, Kenya, A project led by the International Diabetes Federation care professionals is on course to help Madagascar, Republic of Congo, people with diabetes in ten African coun- Rwanda, Senegal, Tanzania and Uganda, At the same time a suite of materials has tries avoid the trauma of diabetic foot the trained health care professionals will been developed to raise awareness among and the risk of lower limb amputation. use a specially developed risk stratifica- people with diabetes living in the ten tion and intervention tool to tackle the selected countries about the need to care After an initial internal e-diabetes training high rate of foot complications in the for their feet to prevent complications or with UNFM, thirty physicians and nurses countries. existing foot problems worsening. Diabetes UK campaign for better care for children and young people with type 1 diabetes In early June, over 100 children and young people with type 1 diabetes and their families gathered at the Palace of Westminster in London, UK, for the parliamentary launch of Diabetes UK’s ‘Type 1 essentials for children and young people’ campaign. Diabetes UK estimates that only 6% of Baroness Young (CEO of Diabetes UK) with Anna Soubry (MP) and young children and young people in the UK are getting all (‘ten people at the parliamentary launch of the 'Type 1 essentials' campaign. out of ten’) of the recommended diabetes care, services and support that they are entitled to. These are: ■ Care from a specialist team The campaign serves to make children’s diabetes teams aware of ■R egular checks (HbA1c, weight, height etc.) the support that children and young people with type 1 diabetes ■ The right treatments should be receiving and encourages the lobbying, by young ■ Support for self- or parental-care people and their parents, of their members of parliament (MPs) ■ Help with feelings or worries and local health care managers to ensure that these features ■ The right care in hospital are in place in their localities. Children and their parents met ■ A smooth transition to adult services with their MPs on the day while a few families also met with ■ A say in the care they get the Minister responsible for diabetes, Anna Soubry. ■ Support at school ■ Equal opportunities More information at: www.diabetes.org.uk September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 7
News in brief Currently, in Diabetes Research and Clinical Practice On the 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. IMPACT OF BLOOD GLUCOSE MONITORING AFFECT Bookshelf ON FAMILY CONFLICT AND GLYCEMIC CONTROL IN ADOLESCENTS WITH TYPE 1 DIABETES DIABETES ABC Gray WN, Dolan LM, Hood KK. Diabetes Res Clin Pract By Dr. Sherry L Meinberg 2013; 99: 130-5. Illustrated, 56 pages, Outskirts Press (November 7, 2012) ‘This longitudinal study examined whether diabetes-specific Diabetes ABC is a simple overview of diabetes and related conditions family conflict and glycemic control were impacted/explained written for both children and adults, providing tips for parents, caregivers, by negative affective responses to blood glucose checks.’ friends, children and teachers about living with the illness. GLOBAL DIABETES SURVEY – AN ANNUAL REPORT ON QUALITY OF DIABETES CARE Schwarz PEH, Gallein G, Ebermann D, et al. Diabetes Res Clin DIABETES AND ME: AN ESSENTIAL GUIDE Pract 2013; 100: 11-8. FOR KIDS AND PARENTS By Kim Chaloner (Author), Nick Bertozzi (Illustrator) ‘The Global Diabetes Survey … is a standardised, annual, global Illustrated, 176 pages, Hill and Wang (November 5, 2013) questionnaire that will be used to assess responses of representa- tives from 19 diabetes-related stakeholder groups … The findings Author Kim Chaloner was diagnosed with type 1 diabetes at age sixteen. will be freely available for everyone’s use and will be used to Drawing on her own experiences, Kim walks the reader through the basics inform politicians and stakeholders to encourage the improve- of type 1 and type 2 diabetes covering the latest technologies for monitoring ment of the quality of diabetes care in its medical, economical, blood sugar, strategies for nutrition and exercise, how to explain diabetes structural and political dimensions.’ to friends and family members and more.. ARE RECOMMENDED STANDARDS FOR DIABETES CARE MET IN CENTRAL AND SOUTH AMERICA? PUTTING YOUR PATIENTS ON THE PUMP A SYSTEMATIC REVIEW By Karen M. Bolderman (Author), Nicholas B. Argento (Contributor), Mudaliar U, Kim W-C, Kirk K, et al. Diabetes Res Clin Pract Susan L. Barlow (Contributor), Gary Scheiner (Contributor) 2013; 100: 306-29. 128 pages (paperback), American Diabetes Association, Second Edition ‘We evaluated quality of diabetes care in low- and middle-income (September 10, 2013) countries (LMIC) of Central and South America … We also Putting Your Patients On The Pump provides practical instructions identified barriers to achieving goals of treatment and charac- for integrating all the essential elements of a safe and successful insulin teristics of successful programs. … Few studies report quality pump programme including: patient selection and education, starting of diabetes care in LMICs of the doses and fine-tuning, and long-term maintenance. Americas, and heterogeneity across Unique issues surrounding special populations such studies limits our understanding. as children and pregnancy are covered in detail. An Greater regard for audits, use of essential resource for the healthcare professional standardized reporting methods, who requires a desk reference or instructional guide. and an emphasis on overcoming barriers to care are required.’ www.idf.org/diabetesvoice 8 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
My sweet The global campaign Aishath Shiruhana and Aminath Abdul Rahman Aminath Abdul Rahman (Aana) was born in 1985 in Malé, the capital of the Republic of the Maldives Islands situated just southwest of Sri Lanka in the Indian Ocean. Her country’s national tourism campaign – 'the sunny side of life' – reflects the island nation’s international reputation as the ultimate tropical luxury for newlyweds in search of paradise. Consisting of 1190 islands of which only 200 are inhabited, the Maldives was designated as a ‘least developed country’ (LDC) by the United Nations until 2011 when it graduated to upper middle-income status. Prevalence of diabetes in the Maldives (pop. 316,000) is 9.8% and the total number of people living with undiagnosed diabetes hovers just above 8%.1 Today, the greatest challenge faced by people with diabetes in the Maldives is the lack of access to medically necessary diabetes medications or supplies. Multiple injections based on basal- bolus therapy are impossible to administer because even today the only available insulin is long acting insulin. To make matters worse, insulin is only available in the capital because delivery to other outlying islands in the Maldives is too difficult. Learn about one young woman’s journey with type 1 diabetes in the Maldives as told by Aana Rahman with the help of Aishath Shiruhana, CEO of Diabetes Society of Maldives. 10 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
family the global campaign I was diagnosed with diabetes at the commercially available insulin in Malé, age of nine in 1994. Back then most Human Mixtard 30/70, dispensed at the Diabetes Society of Maldives (DSM) people living in Malé, including health- government pharmacy. This was the only was established in April 2000 and care professionals, were not aware of insulin available if you lived with diabetes became a member of IDF in 2002 type 2 diabetes, let alone type 1 diabetes. in the Maldives at the time. to establish greater awareness in Unfortunately, no one told my family the Maldives about diabetes, help much about my condition when I was It took more than ten years, but things patients lead a full and healthy life first diagnosed. My mom and dad did not were going to get better for me. My with diabetes and emphasize the receive any information about the basics first experience learning about diabetes importance of diabetes prevention. of diabetes from the doctors and the only was in 2005 when I joined the Diabetes tertiary care hospital in Maldives did not Society of Maldives (DSM). It was very DSM, with a current membership have the necessary tests to determine exciting and worthwhile for me because of approximately 1200 people, is the whether I had developed type 1 diabetes I was given free medical supplies, such centre for information on diabetes or type 2 diabetes. Instead, I was put as blood glucose testing kits, right after in the Maldives and we educate the on type 2 oral medication based on my I registered. I immediately got involved community through free consulta- tions, screening programmes, and Since I joined DSM, I have never presentations all related to health education. This year, we had well stopped learning. I know that there over 100 new members join the are many children like me who are society and generally had about 1250 follow-up appointments at the grateful for diabetes assistance. clinic. In addition, DSM is continu- ally working to generate awareness hyperglycaemic or high blood glucose in DSM activities as a volunteer and the and improve diabetes care through- symptoms and the wrong medication Society became my second family and out the Region. The result of this ultimately led to diabetic ketoacidosis my virtual cheerleading team on the dia- effort is best reflected in the 2012 (DKA). Due to my constant fluctuat- betes battlefield. Since I joined DSM, I diabetes screening and awareness ing blood glucose levels and after one have never stopped learning. I know that programmes which found that 50% too many hospitalizations, I was finally there are many children like me who of nearly 4000 participants screened put on insulin therapy and told I had are grateful for diabetes assistance from were at high risk for developing type 1 diabetes. Unfortunately, the doc- the Society. In 2008, DSM established type 2 diabetes. tors had no choice but to give me the only a programme for children living with September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 11
The global campaign type 1 diabetes called ‘Save a Diabetic Child’. Funded by the International Diabetes Federation’s Life for a Child (LFAC) Programme and other local donors, ‘Save a Diabetic Child’ ensures that all registered children living with type 1 diabetes in the Maldives are pro- vided with insulin and testing kits. Campers at the first diabetes youth camp in the Region understood the important relationship between diabetes self-management and the promise of a successful future. My relationship with DSM continued to thrive for a few years, but my con- nection to the International Diabetes Federation (IDF) began when I was given the opportunity to attend the first Young Leaders in Diabetes (YLD) in the future with the support of DSM been able to achieve my glycaemic tar- Programme held concurrently with the and YLD. As a yearly programme, and gets with my new pump! World Diabetes Congress in Dubai 2011. with the help of DSM, I also established I was the only member representing the a youth group for diabetes called ‘My I am going to work hard with DSM South East Asian (SEA) Region and be- Sweet Family’ which acts as an outreach to make every effort possible to pro- cause of this, I was selected to be the programme all over the Maldives. vide insulin pumps to all children in SEA representative for the YLD Council. the Maldives. There is nothing more One of my first assigned projects was to For so long I thought important than making the dreams of conduct a five-day diabetes youth camp having an insulin children with diabetes a reality. for 18 children living with diabetes from pump was an across the Maldives. As the first diabetes youth camp in SEA, the main goal of impossible dream. the programme was to foster diabetes This year, I have been selected as an Aishath Shiruhana and acceptance and help participants feel organizing committee member for Aminath Abdul Rahman at ease in a community where having YLD Leadership Training at the World Aishath Shiruhana is Chief Executive diabetes is the rule, not the exception. Diabetes Congress in Melbourne 2013. Officer, Diabetes Society of Maldives. The campers went home feeling more It is also an amazing year for a different Aminath Abdul Rahman is South East Asia – Maldives representative of the IDF Young self-confident, and self-reliant having reason. For so long I thought having an Leaders in Diabetes (YLD) Programme.. understood the important relationship insulin pump was an impossible dream between diabetes self-management and until this May when a donor selected me References the promise of a successful future. I as the recipient of my very own pump. 1. International Diabetes Federation. IDF Diabetes Atlas, 5th edn. IDF. Brussels, 2011. hope to facilitate more diabetes camps I am happy to report that I have finally 12 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
the global campaign Protecting kids' rights: IDF and select partners launch Kids and Diabetes in Schools (KIDS) project in Brazil and India Anne Belton and Bénédicte Pansier Diabetes is increasingly becoming a more common In June 2013, IDF, in collaboration with the International health threat for young people across the world, Society for Paediatric and Adolescent Diabetes (ISPAD) and demanding local communities – particularly Sanofi Diabetes, launched the Kids and Diabetes in Schools those in low- and middle-income countries – (KIDS) project. KIDS, as a multi-stakeholder initiative, aims to foster a safe and supportive school environment execute measures that will ensure young people for children with diabetes to manage their diabetes and with diabetes can live equally rich and fulfilling fight discrimination. The fundamental rights of children lives as their peers. In collaboration with select living with diabetes include the freedom to access care and partners, the International Diabetes Federation has support to manage diabetes appropriately and to be fully developed a project designed to support children’s included and engaged in all school activities to achieve rights, ensuring school days are happy days for the their full potential. KIDS also aims to raise awareness of diagnosed, and encouraging healthy behaviours diabetes and promote healthy diet and exercise habits in among all school-aged children worldwide. the school community. September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 13
The global campaign At the end of the first phase of the project (18 months), a Global Diabetes in Schools Toolkit will be developed and made avail- able to IDF Member Associations to roll out the project, after the pilot launch, in other successive parts of the world. In the second phase, KIDS aims to achieve government support for systemic change for children with diabetes in schools including dissemination of national guidelines. Global threat of childhood diabetes Type 1 diabetes is one of the most common chronic child- hood diseases, affecting an estimated 490,000 children under 15 years. The incidence of type 1 diabetes among children is increasing in many countries and approximately 78,000 children under 15 years are estimated to develop type 1 diabetes annually worldwide.1-3 Type 2 diabetes in childhood has the potential to become a global public health issue. Young people today also face another danger that threatens their ability to attain a healthy and successful future. Evidence shows that type 2 diabetes is also increasing in children and adolescents around the world at alarming rates. With rising levels of childhood obesity and physical inactivity in many countries, type 2 diabetes in childhood has the potential to become a global public health issue.4-6 Against this backdrop, the school system is a vitally important environment for children with diabetes, especially as it relates to day-to-day self-management care and total well-being. Schools perform a critical role supporting and educating children with diabetes so they have the same opportunities Implementing and integrating KIDS into school communities afforded other children, such as participating in the classroom successfully requires serious commitment from policy makers or playground. and education authorities; completion of situational analyses summarizing opportunities and challenges; execution of a IDF leadership for childhood diabetes fully-fledged school awareness campaign; and development In March 2005, IDF released a position statement on the and introduction Rights of the Child in of a diabetes school the School declaring information pack and teacher training KIDS aims to achieve government that children have the right to man- for selected coun- support for systemic change for age their diabetes tries. IDF’s Young Leaders in Diabetes children with diabetes in schools. without being ex- cluded or discrimi- Programme will lend nated against7 in the support and help disseminate the KIDS packs when the project school setting. The Position Statement calls for all children kick-starts in Brazil and India, our two pilot countries. with diabetes to have an individualized diabetes plan devel- 14 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
the global campaign oped in a collaborative approach with healthcare providers, Anne Belton and Bénédicte Pansier school staff and the family. Anne Belton is a Diabetes Nurse Educator and Education Consultant. She has been a member of the Federation's Consultative Section Numerous guidelines and educational materials on diabetes in on Education since 2000 and is a Vice-President of the International Diabetes Federation for 2013-15. schools for teachers, parents and children have been made avail- Bénédicte Pansier is Account Manager, International Diabetes Federation. able in several countries.8-11 Effective campaigns about diabetes management in schools include the Australian Diabetes Council’s ‘Diabetes kidsandteens Careline’ (2006), the American Diabetes Association’s ‘Safe at School’ Campaign (2011), Diabetes UK References Children's Campaign ‘Let's Talk Type 1 Diabetes in Schools’ 1. International Diabetes Federation. IDF Diabetes Atlas, 5th edn. IDF. Brussels, 2011. (2011), the IDF and its Italian Member Association's ‘Good Diabetes Control’ campaign for schools (2012/2013) and the 2. Diamond Project Group. Incidence and trends of childhood type 1 diabetes Diabetes Program at Schools in Turkey (2012).12 worldwide 1990-1999. Diabet Med 2006; 23: 857-66. 3. Patterson CC, Gyürüs E, Rosenbauer J, et al. Trends in childhood type 1 diabetes Despite this work, evidence suggests that many children incidence in Europe during 1989–2008: evidence of non-uniformity over time in rates of increase. Diabetologia 2012; 55: 2142-47. and adolescents with diabetes continue to face barriers to education and endure discrimination and stigma, in 4. Alberti G, Zimmet P, Shaw J, et al. Type 2 diabetes in the young: the evolving particular in low- and middle-income countries. School epidemic: the International Diabetes Federation consensus workshop. Diabetes Care 2004; 27: 1798-811. and national policies don’t often recognize the special needs of a child living with diabetes. Lack of the assistance 5. Chiarelli F, Marcovecchio ML. Insulin resistance and obesity in childhood. Eur J Endocrinol 2008; 159: 67-74. needed to monitor blood glucose, administer insulin and treat emergency situations (e.g. hypoglycaemia) can result 6. Rosenbloom AL, Silverstein JH, Amemiya S, et al. Type 2 diabetes in children in the child being excluded from school activities. Some and adolescents. Pediatr Diabetes 2009; 10: 17-32. schools believe they reserve the right to deny access to a 7. International Diabetes Federation. IDF Position Statement: The Rights child with diabetes and even when allowed to matriculate, of the Child with Diabetes in the School. IDF. Brussels, 2005. some children are barred from participating in extracur- 8. American Diabetes Association. Diabetes care in the school and day care setting. ricular activities.13-16 Ignorance and misconceptions about Diabetes Care 2012; 35: S76-80. diabetes held and fostered by school personnel, fellow 9. Evert AB, Hanson JH, Hood KK, et al. AADE Position Statement Management students and parents of other students are often at the root of children with diabetes in the school setting. Diabetes Educ 2008; 34: 439-43. of such stigma and discrimination. Furthermore, a school 10. National Diabetes Education Program. Helping the Student with Diabetes classroom may not provide clean and adequate space to sup- Succeed: A Guide for School Personnel. NDEP. Washington DC, 2010. port self-management tasks such as testing blood glucose, storing snacks, injecting insulin or storing equipment for 11. Diabetes UK. Children with Type 1 Diabetes at School. What All Staff Need to Know. Diabetes UK. London, 2005. injections or lancets for blood glucose testing. 12. Şükrü Hatun. Diabetes program at schools in Turkey. J Clin Res Pediatr Endocrinol 2012; 4:114-5. Endpoints of KIDS - Phase 1 The IDF KIDS project will begin with a feasibility study 13. Amillategui B, Calle JR, Alvarez MA, et al. Identifying the special needs of supported by two local implementing partners, the IDF children with type 1 diabetes in the school setting. An overview of parents' perceptions. Diabet Med. 2007; 24: 1073-9. Member Association Associação de Diabetes Juvenil (ADJ) in Brazil and the Public Health Foundation of India (PHFI). 14. Olympia RP, Wan E, Avner JR. The preparedness of schools to respond to emergencies in children: a national survey of school nurses. Pediatrics 2005; This feasibility study will identify and engage with relevant 116: 38-45. stakeholders at national, regional and local levels, review existing guide- 15. Hellems MA, Clarke WL. Safe at school: a Virginia experience. Diabetes Care 2007; 30: 1396-8. lines and initiatives on diabetes in the school environment and 16. Pinelli L, Zaffani S, Cappa M, et al. The ALBA Project: an evaluation of needs, management, fears of Italian young patients with type 1 diabetes in a school carry out a needs assessment in `setting and an evaluation of parents' and teachers' perceptions. Pediatr Diabetes. the two countries. The results are 2011; 12: 485-93. expected by September 2013. September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 15
The global campaign A look 'upstream' to Melbourne In the spirit of patient centeredness Angus Forbes Are the latest treatment innovations The Education and Integrated Care enough for people living with diabe- Stream scheduled for the IDF World tes in the 21st century? How can the Diabetes Congress in Melbourne will medical profession utilise current address global perspectives on key di- technologies and treatment inno- lemmas associated with diabetes self- management innovations in the 21st vations without losing touch with century. Today’s advances in diabetes patient values and the power of com- medical therapies continue to expand passion and insight? opportunities for improving treatment and management strategies. However, Leading the way for the Education advanced treatments are only effective and Integrated Care Stream, Angus if people with diabetes can use them Forbes allows us to ‘shadow’ the appropriately and accommodate them exciting programme planned for within their daily lives.1 There is also Melbourne 2013. Care integration growing recognition within the diabe- and patient-centeredness will be tes community that an individualised threaded throughout lectures, dis- approach to diabetes care2 may lead cussions and symposia with renewed to enhanced adherence to therapy. energy and insight. To reflect the im- Individualised programmes should portance of empowerment, people identify more than just individual risk assessment, and actively involve peo- living with diabetes will be actively ple with diabetes in identifying their participating in forums and discus- own targets and treatment decisions.3 sions alongside healthcare provid- Consequently the value of diabetes ers. Switching to a broader perspec- innovations, especially those designed tive, global variations in innovation, to motivate people and reinforce posi- education and self-management tive self-management behaviours, is care will be reviewed, helping to directly linked to improved outcomes address the need for a worldwide making them essential for advancing diabetes care reality check. diabetes care. 16 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
the global campaign Care integration has been a key buzzword health models; the interface between the a reality for people living with diabe- in the healthcare landscape for the last person with diabetes and family mem- tes? To answer this question, we will be decade. Currently identified as one of the bers; and innovative approaches to inte- sharing key multinational data that may most important qualities for the develop- grating care systems. reveal whether patient values actually ment of effective care systems in diabetes, guide clinical decisions. In the spirit of integration is a professional healthcare Advanced treatments patient centeredness, we will facilitate preoccupation because the collective ap- are only effective if discussions and ask people living with proach of providing patient-centred care, people with diabetes diabetes about current trends in patient quality, safety and efficiency all in one is education. We will also examine alterna- demanding. Care integration is an over- can use them tive techniques for engaging patients in arching theme embedded throughout the appropriately and their care, including the use of narrative Stream, and we will examine important accommodate them medicine and through media such as art areas where integration is challenging, and storytelling. We are privileged that within their daily lives. especially for mental health and diabetes; one of the leading advocates of a patient transitions across the ages and in the Is person centeredness, regarded as a centred approach to diabetes educa- context of gender; integrating alternative central tenant of modern diabetes care, tion, Professor Jean-Philippe Assal, will September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 17
The global campaign controversial topics such as current dietary trends (weeding out the fads) and scrutiny related to extreme levels of exercise. Opportunities for participants to interact with these important topics through interactive discussions and in workshops will be provided. Angus Forbes Angus Forbes is FEND Professor of Clinical Diabetes Nursing at King’s College London, UK. He leads the Education and Integrated Care Stream at the IDF World Diabetes Congress in Melbourne, 2013. present a lecture entitled, ‘Power and potential for greater self-management fragility in health, illness and disease: the support is enhanced. role of healthcare providers and patients’ as part of the Melbourne programme. There will be a symposium on the chal- lenging area of type 2 diabetes preven- Is person centeredness, tion in young people. Clearly with ris- regarded as a central ing childhood obesity levels there is an urgent need to develop effective strate- References tenant of modern gies to help young people become more 1. Odegard PS, Capoccia K. Medication taking diabetes care, a active and consume less highly refined and diabetes: a systematic review of the literature. Diabetes Educ 2007; 33: 1014-29. reality for people carbohydrate.5 We will be exploring this living with diabetes? from a number of perspectives, includ- 2. Inzucchi SE, Bergenstal RM, Buse JB, et al. ing innovative work on the use of play to Management of hyperglycemia in type 2 diabetes: a patient-centered approach: position statement Additionally, we will consider the increase activity and through integrated of the American Diabetes Association (ADA) important area of adherence, which programmes targeting schools, families and the European Association for the Study of Diabetes (EASD). Diabetes Care 2012; 35: 1364-79. we know is a significant predictor of and the environment. diabetes complications.4 Many factors 3. N ational Institute for Clinical Excellence (NICE). contribute to adherence, and the pro- Finally, reflecting the global nature of Type 2 Diabetes: the Management of Type 2 gramme will highlight some current in- the Congress, we will have presenta- Diabetes. Clinical guideline; no. 87. NICE. London, 2009. novations in this area including sessions tions from different regions, highlight- on the potential of asking more from ing innovative strategies from all over 4. Donnelly LA, Morris AD, Evans JMM, et patients in the development of therapies; the world. Presentations from low- and al. Adherence to insulin and its association with glycaemic control in patients with quality use of medicines; and how in- middle-income countries (LMICs) will type 2 diabetes. QJM 2007; 100: 345-50. novations actually enhance adherence. examine how innovative education pro- E-health technologies are evolving rap- grammes are often executed with limit- 5. World Health Organization (WHO). Childhood overweight and obesity. http://www. idly in tandem with the changing way ed resources. We will also explore global who.int/dietphysicalactivity/childhood/en people communicate and interact more variations in access to psychological and generally. In addition to the use of social self-management care with a special 6. Peyrot M, Burns KK, Davies M, et al. Diabetes Attitudes Wishes and Needs media and mobile health (m-health) symposium from the DAWN 2 Study.6 2 (DAWN 2): A multinational, multi- interventions, we will discuss how new The programme will showcase current stakeholder study of psychosocial issues in technologies can be integrated within trends in diabetes education worldwide. diabetes and person-centred diabetes care. Diabetes Res Clin Pract 2013; 99: 174-84. the wider care system and how the There will also be special sessions on 18 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
the global campaign A look 'upstream' to Melbourne Prioritising diabetes on the global agenda Linong Ji The Stream will provide a comprehen- The global impact of diabetes in the 21st century has been sive look at the global challenges facing compared to the after-effects of a tsunami: diabetes threatens diabetes care and treatment today and ask the big questions relating to diabetes the future of many millions and crushes the stability of national and global health. How can we create health and economic systems. Climate change, globalisation, national diabetes plans which will be urbanisation, changing demographics and economic shifts are helpful not only to people with diabetes all part of the bigger global picture in which diabetes plays but also to people at risk? What should the role of WHO and other international an increasingly dominant role. organisations be in creating these plans? What is the impact of globalisation and Professor Linong Ji, lead for the Global Challenges in Health urbanisation on diabetes and how can we Stream, introduces the upcoming Melbourne programme, mitigate their negative effects? Speakers explaining the obligation of all sectors to prioritise diabetes. from all over the world will identify what works both locally and globally in terms Invited experts will examine what we must do to frame diabetes of combatting the epidemic and what still within the larger public health context and secure a healthier needs to be done. Our objective should future for everyone, irrespective of their geographic location. be to foster real change for people with diabetes and those at risk. September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 19
The global campaign Advocating change the first time. As the age of populations We hope you will join us for our sessions IDF in cooperation with the NCD increase, so does the overall risk for de- because this really is about you! I look Alliance has been at the forefront of glob- veloping type 2 diabetes. The increasing forward to seeing you in Melbourne al health advocacy, working to position number of co-morbidities in an ageing and joining together to shape the future diabetes and other Non-communicable population also complicates treating of diabetes. Diseases (NCDs) on the global health diabetes in this population. Stream ses- agenda and the post-2015 development sions dedicated to ageing will focus on agenda. In 2012, the World Health our health systems and whether or not Assembly took a crucial step in acknowl- they are ready to deal with the impact of edging the problem by setting a target to rapidly changing demographics. reduce preventable NCD deaths 25% by 2025. Experts in the Global Challenges From global to local in Health Stream will consider this target Unless we can make an impact on the alongside the historic target to ‘halt the lives of people with diabetes in the ‘real rise in diabetes,’ with a constructively world,’ discussion and debate on research Linong Ji critical eye. Are the WHO targets hype outcomes will fall short of making a Linong Ji leads the Global Challenges in or hope? How do we achieve them in real difference. The Global Challenges Health Stream at the IDF World Diabetes low-and middle-income countries? in Health Stream will therefore focus a Congress in Melbourne, 2013. He is a Professor of Medicine, Director of the large part of its attention on how we can Department of Endocrinology and An ageing society and its accompany- translate research to real world settings. Metabolism at Peking University People’s Hospital and Co-Director of Diabetes ing challenges to public health will be Unified, we can fight the epidemic on Centre of Peking University. He is the another essential focus of the Stream. the diabetes battlefield, where the disease recent President of the Chinese Diabetes Society and a Vice-President of the In 2030, the number of people over 60 continues to claim so many lives in com- International Diabetes Federation. will outnumber those under fifteen for munities and societies. 20 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
the global campaign National programme in Turkey: Diabetes at School Şükrü Hatun and Şeyda Özcan In 2010, Turkey’s Diabetes All school children with diabetes de- recent study, upon returning to school, Program at School was serve the same educational opportuni- the HbA1c of children with type 1 dia- developed as a joint protocol ties as their healthy peers. Teachers and betes increased and they had problems school staff have the responsibility to with their diabetes care. Some children initiated by the Turkish create an equal opportunity learning with type 1 diabetes are forbidden to Society of Paediatric environment for all children, including participate in physical education and Endocrinology and Diabetes in those with diabetes. Educating teach- some activities such as school trips cooperation with the Ministry ers about diabetes and organizing the are off limits. It has been reported that of Education and Ministry school environment for better diabetes some infant nurseries and kindergartens of Health. Objectives of the care will reduce the problems faced by refuse registering children diagnosed programme targeted school children with diabetes in school and with diabetes to avoid the respon- improve their quality of life. Providing sibility of care. Children with type 1 communities across Turkey diabetes awareness in the school en- diabetes are sometimes labelled as sick in order to raise awareness vironment may also assist with early and are viewed as abnormal due to lit- about type 1 diabetes, provide detection and diagnosis. tle awareness or facts about diabetes. better diabetes paediatric On the contrary, children with diabe- care, improve nutritional Children and diabetes in Turkish tes should not only be allowed access, standards for school children schools: eliminating the avoidance but also motivated to participate in all and prevent obesity. In just of care activities with their schoolmates. To two years, a number of trained There are approximately 20,000 chil- accommodate students with diabetes, dren, mostly of school age, living with a school nurse or a counsellor should teachers detected symptoms diabetes (mostly type 1) in Turkey. be trained on basic diabetes care. Other of diabetes in 40 undiagnosed Unfortunately, many children living diabetes care requirements may include children. Şükrü Hatun and with type 1 diabetes and their families a private space for measuring blood Şeyda Özcan explain why encounter problems in accessing the glucose and injecting insulin as well as and how they achieved so school environment and participating the provision of healthy school meals, much in so little time. in school programmes. According to a refreshments and toilet breaks during September 2013 • Volume 58 • Special Issue 1 DiabetesVoice 21
The global campaign classes. Moreover, teachers should learn and Ministry of Health. Target groups the signs of diabetes and be able to rec- of the Diabetes Program at School in- ognize symptomatic children earlier in clude all professional teachers across order to avoid serious events such as Turkey, teachers who currently oversee diabetic ketoacidosis. the education of children with diabe- tes, members of the paediatric diabetes One third of children medical team, local representatives of have also developed the Ministry of Education and Ministry of Health and school administrators. an increased risk for adulthood obesity and/ The objectives of the programme are to: Soner Aydın, 13 years old, or type 2 diabetes. ■ Raise school community and teacher was diagnosed with type 1 awareness about type 1 diabetes diabetes because his teacher The diabetes care and detection concern ▶ ensure early diagnosis of type 1 dia- was aware of his symptoms. in schools becomes even more complex betes and decrease the frequency of with the growing problem of weight- diabetic ketoacidosis among school gain and obesity in childhood. Obesity children. Soner Aydın, 13-years-old, is an 8th grade student at Mehmet Soykan Primary frequency among the age group of six ■ Provide better care for children with School in Sakarya’s Akyazı Kuzuluk to sixteen years has increased from 5% diabetes Village. to 10.5% (16.3% among high income ■ Create a healthy nutrition attitude level group) in the last eight years in among school children In December 2012, Soner was diagnosed Turkey. One third of children have also ■ Raise awareness about obesity with type 1 diabetes at the Kocaeli Medical developed an increased risk for adult- School Pediatric Service. Soner went to hood obesity and/or type 2 diabetes. Diabetes Program at School materials the hospital with his story about drinking Childhood obesity is caused primar- and activities excessive amounts of water, waking up at ily by poor lifestyle habits including The Diabetes Program at School, offi- night to urinate, having to frequently ‘lay the consumption of high-calorie or cially initiated on November 12th, 2010 in his head on the desk’ due to fatigue in processed junk food such as sugar- Istanbul, succeeded in drawing together the classroom and constantly asking his sweetened beverages, and physical a large group of teachers and securing teacher for bathroom breaks during class. inactivity. Preventing obesity in adult- broad coverage from the national press. Soner’s science teacher, Deniz Göktepe, directed him to the hospital because she hood depends mainly on the efforts in Each of the teachers who participated in had grown suspicious of his situation in childhood and around puberty. In re- the national meeting went on to organise school. Deniz weighed the available in- cent years, the government has directed diabetes meetings in schools with the formation and warned her student he more attention to childhood nutrition, assistance of local authorities. In 2011, a might have diabetes, suggesting he have and the Radio and Television Supreme one-day training meeting was organised his blood sugar checked only to find out Council (RTÜK) has limited advertise- across Turkey, which included teach- Soner’s blood sugar was 384 mg/dl. Deniz ments that promote high-calorie food. ers, government officials, and paediatric relayed to those that thanked her that she Turkey’s Ministry of Education has also diabetes and obesity experts. By World had been informed because she attended restricted sales of junk food and sugar- Diabetes Day 2011, the entire campaign the educational seminar organized by sweetened beverages at schools. was launched and millions of school the Diabetes at School programme. She children and teachers joined the school added that diabetes was a condition famil- Aim of Diabetes Program at School training sessions that were organised iar to her family, how the latest seminar The Diabetes Program at School was within the scope of the programme and had helped her realize that Soner might have developed diabetes, and would also developed as a joint protocol initiated facilitated by diabetes health experts. inspire her to prepare a meeting about by the Diabetes Working Group embod- diabetes in her school and become per- ied in the Turkish Society of Paediatric Awareness was further reinforced with a sonally involved with Soner’s case. Endocrinology and Diabetes in coop- poster campaign, entitled, ‘Does my child eration with the Ministry of Education have diabetes?’ and distributed to 60,000 22 DiabetesVoice September 2013 • Volume 58 • Special Issue 1
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