Draft Status Report on Children and Adolescents with Diabetes in … · 2010. 7. 28. · This status report on the situation of children with diabetes arises from project 2007104:

Draft Status Report on

Children and Adolescents with Diabetes in the EU 2009

European Status Report on Diabetes in Children 2009 2

Remarks This status report on the situation of children with diabetes arises from project 2007104: “Better control in pediatric and adolescent diabetes in the EU: working to create Centres of Reference (SWEET)” which has received funding from the European Union, in the framework of the Public Health Programme. The sole responsibility for the content lies with the authors. The Executive Agency is not responsible for any use that may be made of the information contained therein. SWEET is based on a strong partnership between well established European-wide diabetes organisations representing key target groups:

The UK arm of the SWEET project has received additional funding of the Diabetes Foundation UK. The SWEET Project acknowledges support through unrestricted educational grants from the following Foundations and corporate sponsors:

Diabetes Excellence Center


Table of Contents1 Remarks ............................................................................................................... 2 Introduction .......................................................................................................... 5 Children and Diabetes ............................................................................................ 6 Diabetes increasingly affects children .................................................................... 6 About diabetes ................................................................................................... 6 The importance of effective diabetes management .................................................. 6 Diabetes is different for children ........................................................................... 7 The challenges of managing diabetes effectively ..................................................... 7 Why diabetes needs constant attention.................................................................. 7 Need to address shortcomings in care.................................................................... 7 Key Facts and Figures.......................................................................................... 9 Sources ........................................................................................................... 10

Responding to the Challenges: The Sweet project .................................................... 11 Methodology ....................................................................................................... 12 Questionnaire Survey ........................................................................................ 12 Respondents to the Questionnaires ..................................................................... 13 Long Questionnaire ........................................................................................ 13 Short Questionnaire........................................................................................ 15

Analysis of Results: Current Status of Diabetes Care in the EU .................................. 16 Epidemiology – national registers........................................................................ 16 Organisation of pediatric diabetes care ................................................................ 16 Are there defined criteria for the creation of a pediatric diabetes centre in your country? ....................................................................................................... 17

Standards of care.............................................................................................. 18 Education for children with diabetes .................................................................... 18 General Policy Framework for Diabetes ................................................................ 19 Is there a national diabetes plan in your country? .............................................. 19 Is there a national program specifically addressing children and adolescents with diabetes in your country? ................................................................................ 19

Preliminary Conclusions and Recommendations ....................................................... 20 Individual Country Reports.................................................................................... 22 Austria............................................................................................................. 22 Belgium ........................................................................................................... 26 Bulgaria ........................................................................................................... 29 Cyprus............................................................................................................. 33 Czech Republic ................................................................................................. 36 Denmark.......................................................................................................... 39 Estonia ............................................................................................................ 43 Finland ............................................................................................................ 46 France ............................................................................................................. 49 Germany.......................................................................................................... 52 Greece............................................................................................................. 57 Hungary........................................................................................................... 60 Italy ................................................................................................................ 63 Latvia .............................................................................................................. 67 Lithuania.......................................................................................................... 71 Luxembourg ..................................................................................................... 74 the Netherlands ................................................................................................ 77 Poland ............................................................................................................. 80 Portugal........................................................................................................... 84 Romania .......................................................................................................... 87 Slovakia........................................................................................................... 90 Slovenia........................................................................................................... 93 Spain............................................................................................................... 96 Sweden ........................................................................................................... 99 United Kingdom .............................................................................................. 102


Annexes ........................................................................................................... 105 1) Questionnaire on the current status of diabetes care in the EU (long questionnaire).................................................................................................................... 105 2) Questionnaire on the current status of diabetes care in the EU (short questionnaire).................................................................................................................... 120 3) List of SWEET partners.......................................................................... 125 4) List of Collaborating Partners ................................................................. 126


Introduction We are delighted to present you with the first status report on children and adolescents with diabetes in the EU. Diabetes in children and adolescents is on the rise. More than 200 children develop type 1 diabetes every day. The number of children affected by type 1 diabetes alone is growing at an alarming rate of 3-5% per year. The top 10 countries in terms of incidence are mostly European. An additional worrying trend is that type 2 diabetes is growing at an alarming rate among children and adolescents. Still, many children with diabetes in Europe do not have access to the specialized care and education they need in order to control their diabetes effectively. The SWEET project aims to address this issue. The overall objective of SWEET is to improve secondary prevention, diagnosis and control of type 1 and type 2 diabetes in children and adolescents by supporting the development of centers of reference for pediatric and adolescent diabetes services across the EU. In order to achieve this important goal, a good knowledge base is essential. This report aims to contribute to improving relevant information with respect to children and adolescents with diabetes in the EU. One of the preliminary conclusions which can be drawn from this report is that there are still many gaps in the data available in the area of pediatric and adolescent diabetes. Continued efforts will there for be needed to address these data gaps. This will remain one of the objectives of the SWEET project. The report includes a an overview of key findings resulting from two questionnaires developed by the SWEET project and distributed to leading pediatric diabetes centers and hospitals in all EU Member States. A summary is provided for the EU as well as per EU Member State. By identifying areas for improvement, the report aims to contribute to the development of policy addressing children and adolescents with diabetes. The preliminary conclusions and recommendations identify first potential action points. Over the next months, more work will be done by the SWEET partners to refine the data included in the report and, perhaps even more important, the related conclusions and recommendations. At this point I wish to thank the work package leaders Zdenek Sumnik and Onrej Cinek for their hard work with the data collection and Anja Strootker and Karoline Lenaers for the help with preparing the report. We look forward to discussing the reports and its conclusions with you in the very near future. With best wishes, Thomas Danne, MD Project Leader, SWEET President, ISPAD


Children and Diabetes

Diabetes increasingly affects children

Diabetes is one of the most chronic conditions of childhood and affects children of all ages. More than 200 children develop type 1 diabetes every day. The number of children affected by type 1 diabetes alone is growing at an alarming rate of 3-5% per year. The top 10 countries in terms of incidence are mostly European. An additional worrying trend is that type 2 diabetes is growing at an alarming rate among children and adolescents.

About diabetes

Diabetes currently affects more than 31 million people in the European Union. This number is expected to rise by 20% by 2025. Diabetes is a serious progressive chronic condition that occurs as a result of problems in the production and supply of insulin in the body. Insulin is the hormone responsible for helping tissues to use glucose (sugar), the body’s energy source. Without an adequate supply of insulin a person with diabetes is unable to keep glucose levels in balance. The two most common forms of diabetes are type 1 diabetes and type 2 diabetes: Type 1 diabetes develops when the body is unable to produce any insulin and occurs usually before the age of 30, most often in childhood or adolescence. It is usually treated by insulin injections or insulin pumps. Diet and exercise are recommended. There is no conclusive evidence thus far that type 1 diabetes can be prevented. Type 2 diabetes develops when the body can still produce some insulin, but not enough, or when there is resistance to the insulin produced. In most cases it is linked to obesity. Type 2 diabetes can be prevented and treated with lifestyle changes such as healthier diet and increased physical exercise. Treatment can involve tablets and/or insulin at a later stage.

The importance of effective diabetes management

Glucose control is essential in diabetes management. Poor glucose control can lead to hypoglycaemia (low blood glucose), a condition that if poorly managed can result in coma or death, or hyperglycaemia, a condition associated with higher than normal blood glucose values. If not managed well, diabetes can lead to serious and costly complications, including cardiovascular disease, kidney failure, blindness and amputation.


Diabetes is different for children

Children and adolescents with diabetes face a lifetime of living with the condition. Despite the increasing number of children affected by diabetes, the condition is often diagnosed too late or misdiagnosed completely. In addition, specific needs of children with diabetes and their families are often overlooked. While the dependence of children and young people with diabetes on insulin and their need for appropriate nutrition are the same as those in adults with diabetes, there are major medical and psychological differences.

The challenges of managing diabetes effectively

Diabetes management has a unique impact on children and their families. The daily life of children is disrupted by the need to monitor blood glucose levels, inject insulin and balance the effects of activity and food. The normal developmental tasks of children and adolescents often compete and conflict with the requirements of intensive diabetes management. All families therefore need help to come to terms with the diagnosis and learn how to cope with their child’s lifelong condition, while simultaneously learning about the complexities of diabetes and its daily management tasks. The treatment regimen for insulin-dependent diabetes is complex and demands constant attention, problem-solving, and self-discipline. Children with diabetes and their family therefore require age-appropriate and comprehensive diabetes education at diagnosis, as well as ongoing access to a competent multidisciplinary diabetes team. All young people have the right to participate fully in all the experiences of childhood and adolescence, regardless of whether they have a chronic disease like diabetes.

Why diabetes needs constant attention

With the rising prevalence of diabetes in children comes the increasing risk of children dying from diabetes. Compared with adults, children are more sensitive to a lack of insulin, and at higher risk of rapidly and suddenly developing DKA (Diabetic Keto-acidosis). Children with DKA have extremely high levels of glucose and acid in their blood, which requires emergency treatment. Without treatment, it has a 100% death rate. It has been shown that even in developed countries children continue to die from DKA.

Need to address shortcomings in care

Access to specialized multidisciplinary care, treatment and age-appropriate education for children with diabetes and their family together with effective self-management may prevent complications and improve quality of life. Unfortunately there are still many differences in levels of and access to diabetes care and treatment across Europe. A study involving 18 pediatric diabetes centers from 12 EU Member States plus Switzerland and


Significant differences in avarage HbA1c between

leading international pediatric diabetes centers

7

8

9

10

11

adjusted HbA1c (%) as measure

for long-term metabolic control

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21

meanmean HbA1c (HbA1c (adjustedadjusted forfor age, age, durationduration and and gendergender))

8.62 8.62 ±± 0.03 %0.03 %

Danne et al. (2001) Diabetes Care center number

• Belgium

• Canada

• Denmark

• Finland

• France

• Germany

• Italy

• Japan

• Macedonia

• Netherlands

• Norway

• Portugal

• Spain

• Sweden

• Switzerland

• U.K.

• U.S.A.

Norway, revealed significant outcome differences among these centers. The study also showed that factors such as attitudes of treatment teams, self-management behaviors, education or patient satisfaction have an important impact on health outcomes1. Early diagnosis, followed by appropriate care and support offered by a multidisciplinary team with good knowledge of pediatric issues can help children and their families to succeed in controlling diabetes so that any child with diabetes can grow up to be healthy and happy.

1 www.hvidoeregroup.org “Persistent differences among centers over 3 years in glycemic control and hypoglycemia in a study of 3.805 children and adolescents with type 1 diabetes from the Hvidore Study Group”, Diabetes Care, Vol.24, Nr.8, p.1342


Key Facts and Figures

Diabetes is a leading cause of premature death in most developed countries. Diabetes is one of the most common chronic diseases of childhood. Despite the increasing number of children affected by diabetes, the condition is often diagnosed too late or misdiagnosed entirely. Of the estimated 440.000 cases of type 1 diabetes in children worldwide, more than a fifth live in Europe (see figure). It is estimated that almost 200 children under the age of 15 develop type 1 diabetes every day across the globe. This amounts to 70.000 children a year. Type 1 diabetes is growing by 3% per year in children and adolescents, and at an alarming 5% per year among pre-school children. An additional worrying trend is that also type 2 diabetes is growing at an alarming rate among children and adolescents. Despite modern treatment, more than 50% of children with diabetes develop complications 12 year after diagnosis. In children with poor blood glucose control, complications occur sooner. When diabetes is diagnosed in people under 40 years old, their life expectancy is shortened by up to 20 years. Furthermore their quality of life is negatively impacted. In total, diabetes affects more than 31 million people in the EU. This number is expected to rise by 20% by 2025. Diabetes is one of the costliest health problems in the world. Diabetes complications represent 5% to 10% of the total healthcare spending in EU Member States.

Crude annual incidence rate of diabetes /100.000 population 0-14 years (core indicator)

0

20

40

60

80

Austria

2005

Cyprus

2005

Denmark

2005#

England

2005

Germ

any

2005*

Poland

2005#

Scotland

2005#

Sweden

2005

Finland

2005

France

2005

Luxembourg

2004

Spain 2004

Clinical database Administrative database

Crude incidence rates (/100 000)

type 1 type 2 total

Figure: The European Core Indicators in Diabetes (EUCID) project, final report 2008: www.eucid.eu


Sources Aanstoot HJ, Anderson BJ, Daneman D, Danne T, Donaghue K, Kaufman F, Réa RR, Uchigata Y. The global burden of youth diabetes: perspectives and potential. Pediatr Diabetes. 2007 Oct;8 Suppl 8:1-44 “Protecting our children worldwide: the first UN observed World Diabetes Day” - Francine Kaufman, Phil Riley – Diabetes Voice, May 2007, Vol. 54, p.9 “What is so different about diabetes in children?” – Thomas Danne, Olga Kordonouri, - Diabetes Voice, May 2007, Vol. 54, p.16 “From adolescence to adulthood: the transition from child to adult care” – Christos Bartsocas – Diabetes Voice, September 2007, Vol.52, p.15 www.hvidoeregroup.org “Persistent differences among centres over 3 years in glycemic control and hypoglycemia in a study of 3.805 children and adolescents with type 1 diabetes from the Hvidore Study Group”, Diabetes Care, Vol.24, Nr.8, p.1342 Diabetes Atlas, 3rd edition, International Diabetes Federation, 2006 Danne T, Lange K, Kordonouri O. New developments in the treatment of type 1 diabetes in children. Arch Dis Child. 2007 Nov;92(11):1015-9 Final report European Core Indicators in Diabetes (EUCID) project, 2008: www.eucid.eu


Responding to the Challenges: The Sweet project “Better control in pediatric and adolescent diabetes in the EU: working to create

centers of reference”

SWEET is a European project which aims to improve secondary prevention, diagnosis and control of type 1 and type 2 diabetes in children and adolescents by supporting the development of centers of reference for pediatric and adolescent diabetes services across the EU. Key objectives and desired outcomes of the project are to: � Improve the knowledge base regarding diabetes in children and adolescents. � Develop a set of recommendations for minimum standards of treatment and care. � Draft recommendations regarding education programs for patients and their carers. � Draft recommendations for pediatric training programs for healthcare professionals. � Develop a definition and criteria regarding centers of reference for diabetes in

children and adolescents as well as a “toolbox” identifying concrete steps towards creating such a center.

Work packages have been developed for each of these objectives, ultimately leading to the creation of centers of reference across Europe and improved control of pediatric and adolescent diabetes in the EU. SWEET is based on a strong partnership of established European and national diabetes organizations. It involves key diabetes stakeholders from various EU Member States: patients, carers, specialists, general practitioners, educators, nurses, dieticians, psychologists and policymakers. This partnership, combined with a strong dissemination strategy, allows knowledge transfer and implementation. The SWEET project aims to build on existing EU initiatives and projects such as IMAGE (primary prevention of type 2 diabetes), BIRO (“Best Information through Regional Outcomes”) and EUCID (“European Core Indicators in Diabetes”), and to make use of data available at national level, provided by diabetes associations and other stakeholders. This 2009 status report on children and adolescents with diabetes in the EU, is a key deliverable of SWEET work package 1 on strengthening the knowledge base regarding the status of pediatric and adolescent diabetes and related care in the EU. As a first outcome of SWEET and a unique overview of key aspects of pediatric and adolescent diabetes care in the EU, the report will form an important basis for the other work packages of the project.


Methodology Work package 1

An important objective of work package 1 (strengthening the knowledge base) was to: � Collect data per EU Member State by using the indicator collection of other EU

initiatives on: - the number of children and adolescents with diabetes per Member state and their

diabetes complications; - existing national care programs addressing children and adolescents with diabetes

(including secondary prevention programs); - existing treatment guidelines for pediatric and adolescent diabetes.

� Analyze data leading to clear conclusions. � Compile information and conclusions into a status report on children and adolescents

with diabetes in the EU.

Questionnaire Survey The data included in this report were collected by means of two questionnaires (Annexes 1 and 2), aiming to strengthen the knowledge base with respect to status of pediatric and adolescent diabetes and related care in the EU. A first (long) questionnaire on the current status of diabetes care in the EU, was sent to leading diabetes centers in the 27 EU Member States. The centers (1 per country) were identified on the basis of either previous scientific or clinical achievements or previous collaboration with the SWEET coordinators. This 15-page questionnaire aimed to collect data in order to establish an overview of: systems of pediatric diabetes care, national policy frameworks regarding diabetes care, quality control of pediatric diabetes care and its financing. The second (short) questionnaire was widely disseminated among European members of the International Society for Pediatric and Adolescent Diabetes (ISPAD) and included questions related to individual pediatric diabetes centers. In order to maintain consistency, the short 5-page questionnaire was also included in the longer questionnaire. Reminders were sent on a regular basis and respondents were encouraged to identify other diabetologists if they did not feel competent to provide specific information. Data were subsequently analyzed using descriptive statistics.


The SWEET questionnaires did not include questions on epidemiological parameters. Existing data sources were used for epidemiological data such as the Diabetes Atlas2, recently published final report of EUCID3 (European Core Indicators in Diabetes) report of 2008, and EURODIAB4. Both these projects are funded by the European Commission. The information on national policy frameworks included in the country reports is based on the EU Diabetes Policy Audit5 which was recently conducted and finalized by the International Diabetes Federation – Europe (IDF Europe) and the Federation of European Nurses in Diabetes (FEND). All country reports were sent to national contact persons for review and final approval. The majority of country reports included in the report (18 in total) have been reviewed by national experts. The following country reports have not been reviewed: Greece, Ireland, Italy, Latvia, Portugal, Slovakia, Slovenia and Spain. For Malta unfortunately no country report could be established. The questionnaires were designed, collected and evaluated by the working group for work package 1 under the leadership of Zdenek Sumnik and Ondrej Cinek from Prague.

Respondents to the Questionnaires Long Questionnaire

In order to obtain data covering the entire European Union, the questionnaire was sent to leading pediatric diabetes centers in all EU Member States. Responses were received from 25 countries (92.59%). It appeared not possible to obtain data on Cyprus and Malta through the questionnaires. The enclosed country report for Cyprus is based on other existing sources, such as the Diabetes Atlas and the EU Diabetes Policy Audit, and was reviewed by a national expert. Table 1: Contributing Leading Centres of Paediatric Diabetology Country

code

Country Diabetologist Institution City

AUT Austria Dr. Edith Schober Univ. Children’s Hospital

Vienna

BEL Belgium Dr. Marc Maes Cliniques St Luc, Université Catholique de Louvain

Bruxelles

2 Diabetes Atlas, 3rd edition, International Diabetes Federation 2006. 3 www.eucid.eu 4 The help of Prof. Dr Chris Patterson (Queen’s University Belfast, UK) is gratefully acknowledged. 5 “Diabetes – The Policy Puzzle: is Europe making progress?”, IDF Europe and FEND, 2008.


BGR Bulgaria Dr. Violeta Iotova University Hospital "St. Marina"

Varna

CZE Czech Republic

Dr. Zdenek Sumnik University Hospital Motol

Prague

DEU Germany Prof. Dr. Kordonouri, Dr. Kracht

Kinderkrankenhaus auf der Bult

Hannover

DNK Denmark Dr. Jannet Svensson Birthe Olsen

Glostrup University Hospital

Glostrup

ESP Spain Dr. Luis Castano Hospital de Cruces Bilbao

EST Estonia Dr. Kaire Heilman University of Tartu Tartu FIN Finland Dr. Mikael Knip Helsinki University

Central Hospital Helsinki

FRA France Dr. Jean-Jacques Robert Hôpital Necker - Enfants Malades

Paris

GBR United Kingdom

Dr. Jeremy Allgrove Barts and the London NHS Trust

London

GRC Greece Dr. Gerasimidi-Vazeou Diabetes Centre, "P and A Kyriakou". Children's Hospital

Athens

HUN Hungary Prof. Dr. László Madácsy Semmelweis University

Budapest

IRL Ireland Dr. Hilary Hoey Sir Adrienne Brennan

National Children’s Hospital

Dublin

ITA Italy Dr. Leonardo Pinelli University of Verona

Verona

LTU Lithuania Dr. Rasa Verkauskiene Kaunas University of Medicine

Kaunas

LUX Luxembourg Dr. Carine de Beaufort Diabetes & Endocrine Care Clinique Pédiatrique

Luxembourg

LVA Latvia Dr. Iveta Dzivite Children’s Endocrinology Centre

Riga

NLD The Netherlands

Dr. H.J. Veeze Diabeter Rotterdam

POL Poland Dr. Ewa Pankowska The Medical University of Warsaw

Warsaw

PRT Portugal Dr. Romao Fonseca Hospital de Dona Estefania

Lisboa

ROU Romania Dr. Viorel Serban Clinical Centre "Cristian Serban"

Buzias

SVK Slovakia Dr. Lubomir Barak Children Diabetes Centre of the Slovak Republic

Bratislava

SVN Slovenia Prof. Tadej Battelino University Childrens Hospital

Ljubljana

SWE Sweden Dr. Gun Forsander The Queen Silvia Childrens Hospital

Göteborg


Short Questionnaire

The short questionnaire was forwarded to the European members of the International Society for Pediatric and Adolescent Diabetes (ISPAD). In total 354 diabetologists or diabetes healthcare professionals were contacted by e-mail and asked to complete the short questionnaire. A total of 108 datasets were eventually collected and processed. The diabetes healthcare professionals who responded to the questionnaires are responsible for the medical care of more than 29,000 children and adolescents with diabetes, which means a representative sample for the European Union (see annex 4).

Table 2: Responses to the short questionnaire listed per country and indicating the number of patients treated by the respondents

Country Respondents Total number of patients under care responsibility of

the respondents

AUT 4 928 BEL 4 615 BGR 5 999 CZE 1 420 DEU 16 3,629 DNK 4 1,080 ESP 5 1,230 EST 1 130 FIN 1 500 FRA 6 2,320 GBR 19 4,222 GRC 1 not indicated HUN 3 1,050 IRL 1 350 ITA 5 2,412 LTU 1 600 LUX 1 190 LVA 1 350 MLT 1 100 NLD 13 1,770 POL 2 1,600 PRT 1 260 ROU 2 494 SVK 1 680 SVN 2 950 SWE 6 2,130 Total 108 29,009


Analysis of Results: Current Status of Diabetes Care in the EU

Epidemiology – national registers Is there a pediatric diabetes register in your country?

Organisation of pediatric diabetes care

Who treats pediatric diabetes?

Competence in pediatric diabetes care is often divided among a pediatric diabetologist, a diabetologist for adults, a pediatrician and a general practitioner. The role of the respective healthcare professionals was measured looking at the following five tasks: prescribing insulin, prescribing glucometers and strips, providing education, prescribing insulin pumps and providing long-term follow up. For each of these tasks, scores were given between 0-4.

What age is typical for transition to adult

care in your country?

Although the average age is 18-19 yrs, in several countries the maximum age for being treated by a pediatric diabetologist is very high or does not exist.

Are there officially recognized pediatric diabetes centers in your country?

� 13 countries reported an active national register: Austria, Belgium, Czech Republic, Denmark, Finland, Hungary, Lithuania, Luxembourg, Latvia, Romania, Slovakia, Slovenia and Sweden.

� 13 countries reported not to have a national register: Bulgaria, Cyprus, Germany, Spain, Estonia, France, UK, Greece, Ireland, Italy, the Netherlands, Poland and Portugal.

� 1 country did not respond. Poland, Germany and Spain reported local or regional diabetes registers.

Yes

No

No response

Pediatric

diabetologist

Diabetologist

for adults

Pediatrician

General

practitioner

� In most countries, the pediatric diabetologist is responsible for almost all key activities in pediatric diabetes care.

� In Portugal, Greece and Belgium diabetologists for adults play a significant role. In Romania and Denmark, competences are shared between pediatric diabetologists, diabetologists for adults and pediatricians.

� In Latvia and the UK the general practitioner also provides diabetes care for children.

Yes

No

No response

� 17 countries have officially recognised pediatric diabetes centres, 9 countries do not.

� The status of an officially recognised centre is usually rendered by the Ministry of Health, less often by the Diabetes Society, or the health insurance scheme.

� In 9 countries the status is permanent. � Better care for patients is considered the most

important advantage linked to the status of an officially recognised centre.


Are there defined criteria for the creation of a pediatric diabetes centre in your

country?

Of the 17 countries which do have recognized pediatric diabetes centers, 8 countries have defined criteria for the creation of a centre. Do the centres have to participate in a quality of care program?

� 5 countries have mandatory quality of care programs. � 3 countries have voluntary quality of care programs. The other countries do not have a quality of care program. Is there a system of quality control of pediatric diabetes care at the national

level? (regardless where the care is provided)

Yes

No

No response

� 7 countries reported a national system of quality control for pediatric diabetes care.

� 19 countries do not have a system of quality control at the national level.


Standards of care Are there defined national standard criteria for diabetes control in pediatric

age?

Are there national guidelines defining the surveillance of chronic diabetes

complications and diabetes associated diseases applicable to pediatric practice?

Education for children with diabetes

How is the content of (patient/diabetes) education for children with diabetes

regulated?

Yes

No

No response

� 17 countries do have national standard criteria, 8 countries do not. 2 countries did not respond.

� These criteria are mostly defined by the national Diabetes Society, an appointed board of experts or the International Society for Pediatric and Adolescent Diabetes.

� In most countries (9 out of 17), the criteria have been published in professional journals.

� 17 countries do have national guidelines for the surveillance of chronic diabetes complications applicable to pediatric practice.

� These guidelines cover mostly the following complications: diabetic retinopathy; diabetic nephropathy; diabetic neuropathy; autoimmune thyroid disease; celiac disease; hyperlipidemia; psychological disorders.

� There appears to be considerable variation in who defines the guidelines (from the local hospital or diabetes centre to the national diabetes association).

� 4 countries (France, Slovakia, Slovenia and Sweden) have a national plan defining the content of pediatric diabetes education.

� In 18 countries there is no national regulation, but it is up to the individual centers to organize education.

� 3 countries (Bulgaria, Germany and Luxembourg) use different tools or systems.

� In 5 countries education is reimbursed without limits, in 10 countries reimbursed with limits, 9 countries no reimbursement at all. One country has a different arrangement.

Yes

No

No

response

National plan

No national

regulation

Different

system

No response


General Policy Framework for Diabetes

Is there a national diabetes plan in your country?

Is there a national program specifically addressing children and adolescents

with diabetes in your country?

� 1 country (Poland) reported a national program focusing on children with diabetes.

� 5 countries have other measures in place addressing children with diabetes, such as a special care framework for children with diabetes (Slovenia) or guidelines on diabetes in children and adolescents (Germany). Spain’s diabetes strategy includes measures targeting children. Austria and the Netherlands have provisions focusing on childhood obesity and type 2 diabetes.

Yes

No

� 12 countries have reported national diabetes plans.

� 15 countries do not have national plans.

Yes

No

Other

provisions


Preliminary Conclusions and Recommendations

The data collected and compiled in this report form an important basis for conclusions and recommendations to be used for the development of policy to improve control of diabetes in children and adolescents across Europe. This section includes some preliminary conclusions and suggestions for policy initiatives at European and national level. Further discussions will take place involving all SWEET partners, working towards the formulation of clear policy recommendations addressing key aspects of pediatric and adolescent diabetes care in Europe. Epidemiology – national registers

When collecting information on the number of children and adolescents with diabetes for each EU Member States, it appeared that available data predominantly cover the age group 0-14yrs. Only 5 of the 26 EU Member States (no data available for one Member State) have data for the age group 15-18yrs, whereas solid data on pediatric and adolescent diabetes should cover the entire age group 0-18yrs. National pediatric diabetes registers are important in the provision of accurate and up-to-date data with respect to children and adolescents with diabetes. However, only 13 out of 25 EU Member States have reported a national pediatric diabetes register. The lack of consistent and reliable data and thus the lack of national pediatric diabetes registers need to be addressed urgently in order to understand the epidemiological patterns of this condition and to fully understand the magnitude and impact of the problem. The publication of this report should be followed by regular exchange of information and good practice with respect to data collection, between relevant authorities of EU Member States and other stakeholders Organization of pediatric diabetes care

SWEET aims to improve secondary prevention, diagnosis and control of type 1 and type 2 diabetes in children and adolescents by supporting the development of centers of reference for pediatric and adolescent diabetes services across the EU. Currently, only 17 out of 26 countries (no information available for one EU Member State) have officially recognized pediatric diabetes centers. In addition, only very few countries have defined criteria for establishing a centre. In order to improve equal access to specialized multidisciplinary care, treatment and age appropriate education, recognized pediatric diabetes centers are needed in all EU Member States, based on clearly defined criteria and standards. The SWEET project will help to facilitate the process of creating centers of reference for pediatric and adolescent diabetes services. However, continued support from the EU and Member States is essential in order to implement the project’s deliverables and to realize the establishment of centers of reference on a long-term basis.


General Policy Framework for Diabetes

Only 12 countries have reported national diabetes plans. Moreover, only 4 countries have reported provisions focusing specifically on children and adolescents with diabetes. Two countries are addressing children and type 2 diabetes by focusing on childhood obesity. Diabetes in children is increasing. The top ten countries in terms of incidence are mostly European. National plans are needed addressing children and adolescents as a vulnerable group, aiming to improve prevention, diagnosis and control of diabetes in children and adolescents. Research

Today, there is no evidence that type 1 diabetes can be prevented. The incidence of type 1 diabetes is increasing at an alarming rate particularly in Europe. In order to design effective interventions aimed at the prevention of type 1 diabetes in children and adolescents, there is a strong need for research on the etiology and pathogenesis of type 1 diabetes. In addition, special emphasis has to be put also on secondary prevention of debilitating complications of the disease by studying measures to optimize treatment and prognosis of childhood diabetes. There is considerable heterogeneity in the delivery of care for children at risk and affected by diabetes in Europe. Research needs to identify measures of process, structure and outcome quality for pediatric diabetes care as well as innovative therapeutic approaches of insulin delivery and metabolic monitoring


Individual Country Reports

Austria

Number of Children and Adolescents with Diabetes

Key Statistics type 1 diabetes in children (0-14y) Population size (0-14y)

1,225,000

Diabetes incidence rates (0-14y) (cases per 100.000 population per year)

13.3

Prevalent cases (0-14y) 1,200

Source: Diabetes Atlas 2006 (IDF) Key Statistics type 2 diabetes and other diabetes forms in children Between 1999 and 2001, 1.5% of the children with diabetes were diagnosed with type 2 diabetes. There is no screening programme for type 2 diabetes in childhood. General Policy Framework for Diabetes National Diabetes Plan The Austrian Diabetes Plan (Österreichischer Diabetesplan) was published in 2005. Since then, diabetes has been considered as a government priority. The Diabetes Plan is a joint cooperation of the Federal Ministry, the Association of Social Insurance and the Austrian Diabetes Association. Note: The Austrian Diabetes Plan is not yet completely implemented. Because healthcare

is partly a regional competence, each region can implement the Plan on its own way.

Diabetes Guidelines

- Austrian Diabetes Association’s Guidelines for Diabetes (2007)

Source: Diabetes Audit 2008 National Care Programmes addressing Children and Adolescents with Diabetes

The Austrian Diabetes Plan focuses specifically on obesity in children. Through the promotion of healthy lifestyles, the Plan aims to reduce obesity rates in children.


Largest National Responding Centre: Univ. Children´s Hospital (Vienna)

General Information

Type of institution University Hospital Number of pediatric patients (regular follow up) 320 Personnel (Full time equivalent) - Number of physicians - Diabetes Nurse - Diabetes Educator - Dietician - Psychologist

2

0.5 0

Insulin regimes

Conventional insulin regimen (≤2 per day)

Multiple daily injections (≥3 per day)

Insulin pump

5.9% 67.8% 26.3%

Application techniques

Syringes only Insulin pens Insulin pumps 1.4% 72.3% 26.3%

Reimbursement

Full Reimbursement Restricted Reimbursement � Injectable insulin � Pens � Insulin pumps & accessories � Lancets � Blood glucose monitoring strips/meters � Retinopathy screening � Lipid testing � Micro/macro albuminuria

� Education (in certain regions) � Self-monitoring blood pressure meters � Psychologists

Note: Reimbursement in Austria is considered complex as it is dependent on the federal state, regional governments and the social insurance system.

Source: Diabetes Audit 2008

(Pediatric) Diabetes Register

Austria does have a national pediatric diabetes register which is under the authority of the Austrian Incidence Study Group. Organisation of Pediatric Diabetes Care

Pediatric Diabetes Centres Officially recognised pediatric diabetes centres No

National system for quality control of pediatric diabetes care No


Other Centres that responded to the Questionnaire Medical University Graz; Department of Pediatrics Type of institution University Hospital Number of pediatric patients (regular follow up) 220

Who treats Pediatric Diabetes The care for children and adolescents with diabetes is managed by pediatric diabetologists in most cases. Sometimes the prescription of glucometers and strips and the prescription of insulin are done by a pediatrician or a general practitioner. In very few cases children with diabetes are treated by a diabetologist for adults. Transition to Adult Care Minimum Typical Maximum 14 18 25 Education National plan No Content Individual centres Reimbursement with limits Education is reimbursed, but is limited to a certain amount (29.33€) per patient for outpatient education. Standards of Diabetes Care

National standard criteria for diabetes control in the pediatric age

under development National guidelines defining the surveillance for chronic disease complications

and diabetes-associated diseases that are applicable to pediatric age

under development

Diabetes Organisations

Organisations for Physicians • Österreichische Diabetesgesellschaft (www.oegd.org) Competences:

� Therapy guidelines � Local diabetology journal

• Österreichische Diabetesberater (www.diabetesberater.at)


Organisations for Patients • Österreichische Diabetes Vereinigung (www.diabetes.or.at)

Competences: � Education � Exchange of experiences � Provision of information

• Aktive Diabetiker Austria ADA (www.aktive-diabetiker.at)


Belgium



1,722,000


15.3


Source: Diabetes Atlas 2006 (IDF)

Key Statistics type 2 diabetes and other diabetes forms in children There are no published data on the estimated proportion of type 2 diabetes in children and adolescents but it is estimated that 1% of the children and adolescents with diabetes have type 2 diabetes. There is no screening programme for type 2 diabetes in childhood. General Policy Framework for Diabetes National Diabetes Plan There is no National Diabetes Plan in Belgium. Diabetes Guidelines

- Recommendations for Good Medical Practice in Diabetes Mellitus (2005) - ISPAD Guidelines


National Care Programmes addressing Children and Adolescents with Diabetes

There is currently no National Diabetes Plan in Belgium addressing children and adolescents with diabetes. Reimbursement

The current status of reimbursement of diabetes treatments for children (for those who are covered by the National Health Insurance) can be summarised as follows: Full Reimbursement (for insulin-dependent patients) Restricted Reimbursement � All self-monitoring material � Education � Quality contol � Visits GP � Visits dietician

� Psychologists



Largest National Responding Centre: Cliniques Universitaires St Luc, UCL

General Information


1.5 1.5

Insulin regimes



Insulin pump

50% 40% 10%


Syringes only Insulin pens Insulin pumps 40% 50% 10%

Other Centres that responded to the Questionnaire Universitair Ziekenhuis (Leuven) Type of institution University Hospital Number of pediatric patients (regular follow up) 200 Heilig Hartziekenhuis (Roeselare) Type of institution University Hospital Number of pediatric patients (regular follow up) 140


Belgium has a National Diabetes Registry since 1989: Belgisch Diabetes Register. One of the objectives of the registry is to determine the number of newly diagnosed diabetic patients under the age of 40 residing in Belgium. Organisation of Pediatric Diabetes Care

Pediatric Diabetes Centres Officially recognised pediatric diabetes centres Yes

Status rendered by Ministry of Health Permanent status No Defined criteria for being a centre Yes

Quality of care programme Yes Consequence None National system for quality control of paediatric diabetes care Yes

Organised by the Scientific Institute of Public Health


Who treats Pediatric Diabetes Most of the Belgian children are treated by a pediatric diabetologist. However, 800 of the 2,600 children with diabetes in Belgium are treated by a diabetologist for adults. Sometimes, the prescription of insulin is done by a pediatrician or a general practitioner. Transition to Adult Care Minimum Typical Maximum None 18 20 Note: There is no maximum age for transition to adult care for adolescents with diabetes

who have a mental handicap. Education National plan No Content Individual centres Reimbursement with limits Standards of Diabetes Care

National standard criteria for diabetes control in the pediatric age No

National guidelines defining the surveillance for chronic disease complications


No


Organisations for Healthcare Professionals and Patients • Vlaamse Diabetes Vereniging VDV (www.diabetes-vdv.be) • Association Belge du Diabete (www.diabete-abd.be)


Bulgaria



1,013,000


9.4

Prevalent cases (0-14y) 600

Source: Diabetes Atlas 2006 (IDF) Key Statistics type 2 diabetes and other diabetes forms in children There are no published data on the proportion of type 2 diabetes in children and adolescents but it is estimated that less than 0.5% of the children and adolescents with diabetes have type 2 diabetes. Bulgaria has a screening programme for type 2 diabetes in childhood, but this programme is restricted: only obese children are screened. General Policy Framework for Diabetes National Diabetes Plan At this moment, there is no National Diabetes Plan in Bulgaria. Diabetes Guidelines

- Bulgarian Association for Endocrinology’s guidelines ‘Endocrinology and metabolic disease’ (2005)



There is currently no National Diabetes Plan in Bulgaria addressing children and adolescents with diabetes. Reimbursement

Full Reimbursement No Reimbursement � Injected conventional and analogue insulin and Oral tablets

� Glucometers � Blood-glucose test strips/ measuring instruments (insulin-dependent patients)

� Lipid Testing � Retinopathy screening � Outpatient treatment � Micro/macro albuminuria

� Lancets � Self-monitoring blood pressure meters � Psychological support


“SWEET Collaborating Centre” for Bulgaria:

Medical University, Varna

General Information


2 0 0 0

Insulin regimes



Insulin pump

13.3% 86.7% 0%



Note: Access to a number of treatments and technologies is restricted due to limited or no availability. Insulin pumps and inhaled insulin are not available, while structured education is limited to some university hospitals.



Bulgaria does not have a pediatric diabetes register. Only incidence registries function locally in Sofia (Bulgaria West) and Varna (Bulgaria East). Organisation of Pediatric Diabetes Care


Status rendered by Other Authority Permanent status Yes Defined criteria for being a centre No

Quality of care programme No National system for quality control of pediatric diabetes care No


Other Centres that responded to the Questionnaire University Pediatric Hospital Clinic for Endocrinology and Diabetes (Sofia) Type of institution University Hospital Number of pediatric patients (regular follow up) 600 Tokuda Hospital (Sofia) Type of institution Private establishment Number of pediatric patients (regular follow up) 100 Medical University of Pleven Type of institution University Hospital Number of pediatric patients (regular follow up) 94 6000 Stara Zagora - "Russki" 62 Street, Outpatient Dept. Type of institution Regional State Hospital Number of pediatric patients (regular follow up) 35

Who treats Pediatric Diabetes In Bulgaria competences in pediatric diabetes care are mostly in hands of a pediatric diabetologist. If a pediatric diabetologist is not available, a diabetologist for adults takes care of the child with diabetes. Transition to Adult Care Minimum Typical Maximum / 18 18 Note: The minimum age for transition from pediatric to adult diabetes care depends on the availability of a pediatric diabetologist. Education National plan No Content ‘Danish Programme’ Reimbursement No Standards of Diabetes Care

National standard criteria for diabetes control in the pediatric age Yes

Defined by National Pediatric Diabetology Consultant National guidelines defining the surveillance for chronic disease complications


Yes

Defined by Ministry of Health and the National Health Insurance Compliant with ISPAD In part



Organisations for Healthcare Professionals and Patients • Bulgarian Diabetes Association • Children’s Diabetes Association • Bulgarian Society of Endocrinology


Cyprus



161,000


14.8


Source: Diabetes Atlas 2006 (IDF) and Pediatric Diabetes 2007, Vol.8, Issue 6, 374-6.

Key Statistics type 2 diabetes and other diabetes forms in children There are no published data on the estimated proportion of type 2 diabetes in children and adolescents. General Policy Framework for Diabetes National Diabetes Plan The Cypriot National Diabetes Plan, launched in 2003, was developed by the National Coordinating Committee for Diabetes. According to the Diabetes Audit (2008), an evaluation of the Plan by the Cyprus Diabetes Association and the Ministry of Health is expected shortly. Diabetes Guidelines

- Translated IDF Global Guidelines (2008)


There is no National Care Programme specifically addressing Children and Adolescents with Diabetes in Cyprus. Reimbursement

Full Reimbursement � Insulin (all types, short-acting insulin still under consideration) � Insulin pens and Insulin pumps and accessories � Oral tablets � Medications for diabetes complications � Lancets � Lipid testing � Blood glucose monitoring strips Retinopathy screening


Largest National Responding Centre:

General Information

Type of institution Pediatric hospital Number of pediatric patients (regular follow up) Approx. 200 Personnel (Full time equivalent) - Number of physicians - Diabetes Nurse - Diabetes Educator - Dietician - Psychologist

2 2

1 2

Insulin regimes



Insulin pump

5 170 15


Syringes only Insulin pens Insulin pumps 1.4% 72.3% 26.3%

Micro/macro albuminuria Note: Reimbursement depends on the patient’s annual income whereas patients with a

low income (les than 38,000€) are eligible for free treatment and medication and patients with a higher income only for free medication.



Cyprus does not have a national pediatric diabetes register. Organisation of Pediatric Diabetes Care


Status rendered by Ministry of Health Permanent status Yes Defined criteria for being a centre No


Who treats Pediatric Diabetes Children and Adolescents with diabetes are treated either by a pediatric endocrinologist, an adult endocrinologist or an adult diabetologist.


Transition to Adult Care Minimum Typical Maximum 20 20 Education National plan No Content Individual centres Reimbursement No Standards of Diabetes Care



and diabetes-associated diseases that are applicable to pediatric age No


Organisations for Physicians and Allied Healthcare Professionals • Endocrine Society

• Diabetes Society Organisations for Patients • Cyprus Diabetic Association


Czech Republic



1,554,475


18.3

Prevalent cases (0-14y) 1,576 Note: Data are from 2003 Source: [Childhood diabetes in the Czech Republic: a steady increase in incidence]. Cinek

O, Sumník Z, Vavrinec J., Cas Lek Cesk. 2005;144(4):266-71

Key Statistics type 2 diabetes and other diabetes forms in children There are no published data on the estimated proportion of type 2 diabetes in children and adolescents but it is estimated that less than 1% of the children and adolescents with diabetes have type 2 diabetes. There is no screening programme for type 2 diabetes in childhood. General Policy Framework for Diabetes National Diabetes Plan The Czech Republic has a National Diabetes Plan (Národní Diabetologický Program, NDP) which dates from 2000 and was prepared by the Czech Diabetes Society. Diabetes Guidelines

- Czech Diabetes Society’s Comprehensive Diabetes Guidelines


There is currently no National Diabetes Plan in the Czech Republic specifically addressing children and adolescents with diabetes. However, children have privileged access to diabetes treatment and benefit from specific reimbursement rules. Reimbursement

Currently, almost all prescribed diabetes treatments, technologies and services are reimbursed in the Czech Republic. Sometimes, patients pay a minimal contribution for certain drugs.


Full Reimbursement Restricted Reimbursement No Reimbursement � Injectable insulin � Pens � Insulin pumps & accessories

� Lipid testing � Micro/macro albuminuria � Retinopathy screening

� Blood glucose monitoring strips/meters

� Lancets � Education

� Self-monitoring blood pressure meters

� Psychological care



The Czech Republic does have a national pediatric diabetes register: Czech Registry of Childhood Diabetes (Český registr dětského diabetu). Organisation of Pediatric Diabetes Care


Status rendered by Diabetes Society Permanent status Yes Defined criteria for being a centre No


“SWEET centre” for the Czech Republic: University Hospital Motol, Prague

General Information


3 1 1

Insulin regimes



Insulin pump

1% 61% 38%




Who treats Pediatric Diabetes The care for children and adolescents with diabetes is managed entirely by pediatric diabetologists. Transition to Adult Care Minimum Typical Maximum 15 19 19 Education National plan No Content Individual centres Reimbursement with limits Education for children and adolescents with diabetes in the Czech Republic is available for free but limited to four sessions per year. Standards of Diabetes Care


Defined by Czech Diabetes Society National guidelines defining the surveillance for chronic disease complications


Yes

Defined by Czech Diabetes Society Compliant with ISPAD Most instances


Organisations for Physicians

• Česká diabetologická společnost: www.diab.cz Organisations for Patients

• Sdružení rodičů a přítel diabetických dětí: www.diadeti.cz


Denmark



1,014,000


20.5


Source: Diabetes Atlas 2006 (IDF) and SWEET Questionnaire Key Statistics type 2 diabetes and other diabetes forms in children According to the Danish Registry for Childhood Diabetes, the proportion of type 2 diabetes in children and adolescents was 1-2% in 2006. There is no screening programme for type 2 diabetes in childhood and adolescence. General Policy Framework for Diabetes National Diabetes Plan The Handlingsplan om Diabetes was launched in 2003. The Plan prioritises prevention of type 2 diabetes and the reduction of complications. According to the Danish Diabetes Association, a considerable number of the proposed actions included in the Diabetes Action Plan have not yet been implemented. Diabetes Guidelines

- National Board of Health Diabetes Guidelines (1994)


Denmark launched its Diabetes Action Plan in 2003, however there is no specific focus on children and adolescents with diabetes. Reimbursement

Denmark’s health insurance scheme provides for the reimbursement of approved diabetes medicines. Individuals must also pay a contribution themselves and for people with chronic diseases, this sum is restricted to a maximum of 458€ per year.


Full Reimbursement Restricted Reimbursement � Insulin � Pens and needles � Insulin pumps & accessories � blood-glucose strips (for insulin-dependent patients)

� Monitoring blood pressure (carried out by healthcare professional) � Cholesterol testing (carried out by healthcare professional) � Micro/macro albuminuria � Treatments by specialists and GP’s � Education

� Blood glucose meters (50% reimbursed for insulin-dependent patients)

� Self-monitoring equipment bought by the patient.

� Psychologists

Note: Insulin pumps and accessories are currently free of charge, but the situation is

problematic according to the Danish Diabetes Association. Since there is no budget specifically allocated for insulin pumps, hospitals are forced to cover the costs, and must therefore prioritise between different treatments. The number of pump users in Denmark has, therefore, been relatively low (both for children and adults) compared to other Nordic Countries.



Denmark has a national pediatric diabetes register: Danish Registry for Childhood Diabetes (Dansk Register for Børne- og Ungdomsdiabetes med tilhørende Biologisk Bank: (DIA-REG B&U). Organisation of Pediatric Diabetes Care


Status rendered by Diabetes Society & Ministry of Health Permanent status Yes Defined criteria for being a centre No

Quality of care programme Yes Consequence Contact Authorities National system for quality control of pediatric diabetes care Yes Organised by the Danish Health Department


Largest National Responding Centre: Glostrup University Hospital (Copenhagen)

General Information

Type of institution University Hospital Number of pediatric patients (regular follow up) 400 Personnel (Full time equivalent) - Number of physicians - Diabetes Nurse/Educator - Dietician - Psychologist

3 3 1

Insulin regimes



Insulin pump

10% 60% 30%



Who treats Pediatric Diabetes In Denmark, the pediatric diabetologists has the main competences and responsibility in pediatric diabetes care. Sometimes, a diabetologist for adults takes care of adolescents with diabetes. Also, the diabetes nurse plays an important role in pediatric diabetes care. Prescription of diabetes treatment can also be done by trainees in pediatric or pediatricians. Transition to Adult Care Minimum Typical Maximum 16 18 19 Education National plan No Content Individual centres Reimbursement yes Standards of Diabetes Care


Defined by National Health Board




Yes

Defined by Danish Society for Childhood Diabetes Compliant with ISPAD Most instances Diabetes Organisations

Organisations for Physicians and Allied Healthcare Professionals • Dansk selskab for børnediabetes (www.dsbd.dk) Competences:

� Therapy guidelines � Local diabetology journal � Evaluation of good clinical practice and control of quality of care

• The Danish Society for Diabetes Nurses (www.dsr.dk)

Competences: � Improve care for children and adults with diabetes

• Danish Society for Endocrinology • Dansk Medicinsk Selskab

Organisations for Patients • Diabetesforeningen (www.diabetes.dk)

Competences: � Support and develop diabetes treatment in Denmark � Education � Camps for patients and their families


Estonia



199,000

Diabetes incidence rate (0-14y) (cases per 100.000 population per year)

16.9


Source: Tartu University Children’s Hospital (data of 1999-2006)

Key Statistics type 2 diabetes and other diabetes forms in children There are no published data on the proportion of type 2 diabetes in children and adolescents but it is estimated that less than 1% of the children and adolescents with diabetes have type 2 diabetes. There is no screening programme for type 2 diabetes in childhood. General Policy Framework for Diabetes National Diabetes Plan There is currently no national diabetes plan in Estonia. Diabetes Guidelines - Guideline on Diabetes Type 1 Treatment (1998) - Guideline on Diabetes Type 2 Treatment (2008) - Guideline on Diabetic Ketoacidosis Treatment of Children (2003, 2008) Other Provisions for Diabetes The prevention of type 2 diabetes is included in the ‘Programme on the Prevention of Cardiovascular Diseases’. At the Tallinn Children’s Hospital overweight children and young people (7-18 years) receive specific examinations for disease risk factors and benefit from various educational measures.


There is currently no National Diabetes Plan in Estonia addressing children and adolescents with diabetes.


Largest National Responding Centre: University of Tartu

General Information


2 1 0 0 0

Insulin regimes



Insulin pump

30% 55% 15%



Reimbursement

The Estonian Health Insurance Fund currently reimburses the following treatments and technologies for diabetes: Full Reimbursement Restricted Reimbursement No Reimbursement � Injectable insulin � Pens � Blood glucose monitoring meters

� Micro/macro albuminuria � Retinopathy screening � Lipid testing � Education

� Insulin pumps & accessories

� Blood glucose monitoring strips

� Lipid testing � Psychologists

� Self-monitoring blood pressure meters

� Lancets



Estonia does not have an official national pediatric diabetes register, but all children with Type 1 diabetes in Estonia are registered and listed in 2 centres. Organisation of Pediatric Diabetes Care


National system for quality control of pediatric diabetes care Yes Two hospitals compare their results annually and this information is open, the

hospitals are identifiable.


Who treats Pediatric Diabetes Children or adolescents with diabetes in Estonia are looked after by a pediatric endocrinologist. Transition to Adult Care Minimum Typical Maximum 15 18 18 Education National plan No Content Individual centres Reimbursement Yes Standards of Diabetes Care




Yes

Defined by Hospitals (n=2) themselves Compliant with ISPAD Most instances


Organisations for Healthcare Professionals and Patients • Eesti Diabeediliit (www.diabets.ee) Competences:

� Therapy guidelines � Local diabetology journal � Authorisations for diabetes practrice � Evaluation of good clinical practice and control of quality of care


Finland


Key Statistics type 1 diabetes in children (0-14y) Population size (0-14y) 887,000 Diabetes incidence rates (0-14y) (cases per 100.000 population per year)

63.0


Source: Finnish Pediatric Diabetes Register

Key Statistics type 2 diabetes and other diabetes forms in children There are no published data on the proportion of type 2 diabetes in children and adolescents but based on the Finnish Pediatric Diabetes Register 18 out of 3229 children and adolescents (0.5%) diagnosed with diabetes in the time period 2002-2007 had type 2 diabetes. General Policy Framework for Diabetes National Diabetes Plan Finland has a National Diabetes Plan: Development Programme for the Prevention and Care of Diabetes (Diabeteksen ehkäisyn ja hoidon kehittämisohjelma - DEKHO). Finland has been considered a model for the prevention, management and treatment of diabetes since the launch of the comprehensive National Diabetes Plan. Diabetes Guidelines

- Multiple Guidelines (Duodecim Handbook for GPs) - Guideline on overall treatment of diabetes (2007) - Guideline on nephropathy (2007)



There is currently no National Diabetes Plan specifically addressing children and adolescents with diabetes in Finland. Reimbursement

In Finland, access to diabetes medication and treatment is generally fully reimbursed. There is no reimbursement for self-monitoring blood pressure meters, as in most EU countries.




Finland has a national pediatric diabetes register. Organisation of Pediatric Diabetes Care

Pediatric Diabetes Centres Officially recognised pediatric diabetes centres No

National system for quality control of pediatric diabetes care Yes Organised by the Finnish Diabetes Association

Who treats Pediatric Diabetes The care of children and adolescents with diabetes is concentrated to pediatric units in university hospitals, central hospitals, and other hospitals with a pediatrician with a special interest in diabetes, and a diabetes team (minimum a doctor and a diabetes nurse) and with access to the services of a dietician, psychologist and social worker. Transition to Adult Care Minimum Typical Maximum 16 18-19 no Education National plan No Content Individual centres Reimbursement Yes

Largest National responding centre: University Hospital for Children and Adolescents (Helsinki)

General Information


5 3 0

Social worker

Insulin regimes



Insulin pump

10% 70% 20%




Standards of Diabetes Care


Defined by Finnish Diabetes Association



Yes

Defined by Finnish Diabetes Association Compliant with ISPAD Most instances


Organisations for Physicians and Allied Healthcare Professionals • Suomen Diabetologit ja Diabetestutkijat (www.diabetes.fi) • Pediatrinen Diabetesklubi (no website available) • Suomen Diabeteshoitajat (www.diabetes.fi) Organisations for Patients • Suomen Diabetesliitto – Finnish Diabetes Association (www.diabetes.fi)

Competences: � Conducting policy advocacy � Enhancing diabetes-related skills � Supporting people with diabetes

Organisations for Patients and Healthcare Professionals • ”Suomen Diabetologit ja Diabetestutkijat” and ”Suomen Diabeteshoitajat” are members

of the Finnish Diabetes Association (www.diabetes.fi)


France



11,022,000

Diabetes incidence rates (0-20y) Diabetes incidence reates (0-15y) (cases per 100.000 population per year)

10.1 (1988-1997) 15

Prevalent cases (0-20y) 14,000 Source: Surveillance épidémiologique du diabète de l’enfant — Institut de veille sanitaire

(2007)

Key Statistics type 2 diabetes and other diabetes forms in children There are no published data on the estimated proportion of type 2 diabetes in children and adolescents but it is estimated that approximately 5% of the children and adolescents with diabetes have type 2 diabetes. General Policy Framework for Diabetes National Diabetes Plan France does not have a National Diabetes Programme running. The previous diabetes programme ended in 2005. Diabetes Guidelines

- French Health Authority and French Medicines Agency’s Guidelines for the Treatment of Type 2 Diabetes

- French Health Authority Guidelines on the Management of Type 1 and 2 Diabetes targeted at Doctors and Patients

- French Health Authority Guidelines on the Management of Type 1 Diabetes in Children and Adolescents (2006)

Other Provisions for Diabetes

- Second National Nutrition and Health Programme (Deuxième Programme National Nutrition Santé) (2006-2010)

- Plan to improve the Quality of Life of Chronic Disease Patients (Plan Améloriation de la qualité de vie des personnes atteintes de maladies chroniques) (2007-2011)

- French Health Authority and National Institute for Prevention and Health Education Guidelines on Therapeutic Education for Patients suffering from Chronic Diseases (2007)




There is currently no National Diabetes Plan in France addressing children and adolescents with diabetes but the French Health Authority published guidelines on diabetes in children and adolescents in 2006. Reimbursement

All pediatric diabetes treatment is fully reimbursed, except education. (Pediatric) Diabetes Register

There is currently no national pediatric diabetes register reported in France but some regional registers are currently under development. Organisation of Pediatric Diabetes Care


Status rendered by Ministry of Health Permanent status Yes Defined criteria for being a centre No


“SWEET centre ” for France: Hôpital Necker - Enfants Malades

General Information


2 2 0

Insulin regimes



Insulin pump

30% 65% 5%




Who treats Pediatric Diabetes Children are treated either in a specialized centre (generally University Hospital) or in general pediatric centres. Competence in pediatric diabetes care is in France is in hands of either a pediatrician or a diabetologist since there are no formal pediatric diabetologists in France. Diabetologists for adults and General Practitioners are never or very rarely involved in pediatric diabetes care. In general, there is only limited supervision of general pediatricians by diabetologists. However, diabetes seminars and trainings are organised for general pediatricians. Transition to Adult Care Minimum Typical Maximum / 18 / Education National plan Yes Content National Plan Reimbursement with limits Reimbursement of education is covered by the National Social Security. More specifically, education is often covered within the cost of hospitalisation: education at diagnosis, during a week-long hospitalisation or in a day-care unit. Education is also provided during Diabetes Camps which are reimbursed for children and adolescents with diabetes. Standards of Diabetes Care


Defined by The Haute Autorité de Santé (French Health Authority) follows the ISPAD Guidelines



Yes

Defined by The Haute Autorité de Santé (French Health Authority) Compliant with ISPAD Yes


Organisations for Physicians • Association de Langue Française pour l’Etude du Diabète et des Maladies

Métaboliques (ALFEDIAM) (www.alfediam.org): scientific society involving adult diabetologists and pediatricians

Organisations for Patients • Association Française des Diabétiques (AFD) (www.afd.asso.fr) - For adult patients • Aide au Jeunes Diabétiques (AJD) (www.ajd-educ.org) - For children, adolescents and

parents


Germany


Key Statistics type 1 diabetes in children (0-14y) Population size (0-14y) Population size (0-18y)

11,487,000 14,400,000

Diabetes incidence rates (0-14y) Diabetes incidence rates (0-18y) (cases per 100.000 population per year)

18.0 20.0

Prevalent cases (0-14y) 14,600 Prevalent cases (0-18y) 25,000 Key Statistics type 2 diabetes and other diabetes forms in children According to the DPV, a German Pediatric Diabetes Registry, 4 to 5% of the newly diagnosed 11 to 18 year old children

Documents

Draft Status Report on Children and Adolescents with Diabetes in … · 2010. 7. 28. · This status report on the situation of children with diabetes arises from project 2007104: