Are European kids any different - ATDC Conference...HbA 1c in 8 high-economy countries Same difference in all ages HbA 1c, glycated haemoglobin Adapted from Anderzén J. Presented

Are European kids any different ?

Prof Dr Thomas Danne

Diabetes Centre for Children and Adolescents, AUF DER BULT,

Kinder- und Jugendkrankenhaus, Hannover, Germany

2019 ATDC, Keystone Colorado

• T. Danne has received research support/consulting fees from Abbott Diabetes Care Inc.,

AstraZeneca, Novo Nordisk A/S, Eli Lilly and Company, Boehringer Ingelheim GmbH, BD

Medical-Diabetes Care, Lexicon, Medtronic MiniMed, Inc., Lexicon Pharmaceuticals, Inc.,

Roche Diagnostics, Sanofi-Aventis Deutschland GmbH, Johnson & Johnson and is a

shareholder of DreaMed Diabetes, Ltd.

• I will not be speaking on off-label topics.

2019 ATDC Conference: Conflict of

Interest

HbA1c in 8 high-economy countriesSame difference in all ages

HbA1c, glycated haemoglobin

Adapted from Anderzén J. Presented at the 43rd annual conference of ISPAD, 18–23 October, Innsbruck, Austria. 2017. Oral O-40

HbA

1c,

mm

ol/

mol

65

60

55

50

70

75

80

2 4 6 8 10 12 14 16 18

Age, years

Wales

England

USA

Norway

DenmarkAustria

GermanySweden

Systematic lowering of HbA1c in England and Wales

Sweden 2008

TEENS 2012

Sweden 2003

England

WalesLinear (Wales)

Media

n H

bA

1c(m

mol/

mol[%

])

2005-06

2006-07

2007-08

2008-09

2009-10

2010-11

2011-12

2012-13

2013-14

2014-15

2015-16

60 (7.6)

62 (7.8)

64 (8.0)

66 (8.2)

68 (8.4)

70 (8.6)

72 (8.7)

74 (8.9)

HbA1c, glycated haemoglobinNational Paediatric Diabetes Audit (NPDA) Report 2015–16Available at: https://www.rcpch.ac.uk/sites/default/files/NPDA_2015-16_audit_report.pdf (last accessed Oct 2018)SWEDIABKIDS Online Statistics. Available at: https://www.ndr.nu/#/knappen (last accessed Oct 2018); Anderson BJ. Diabet Med 2002;19:635-42.

Regional networks established in EnglandBest Practice Tariff introduced in England, April 2012

Diabetes Quality Improvement Network System introduced in England, June 2012

Diabetes Delivery Plans publishedDiabetes Quality Improvement Network System introduced in Wales, Sept 2014

Quality assurance/qualityImprovement consolidation

SWEET 2018

The Diabetes Control and Complications Trial Research Group. N Engl J Med

1993;329:977-986

Onset of Retinopathy Progression of Retinopathy

The landmark randomized controlled trial in type 1

diabetes a quarter century ago: the DCCT is

establishing the importance of HbA1c

The wrong conclusion: we do not need to compromise between

HbA1c and hypoglycemia ?

Registry data: HbA1c can be lowered

without increased risk of hypoglycemia

N=30,708 patients with T1D

305 diabetes centers in Germany

and Austria

1995-2009

A1c: 8.7±1.8% to 8.1±1.5%

(0.038% decline/year)

Registry data: HbA1c can be lowered

without increased risk of hypoglycemia

There was a significant

drop in the frequency

of severe hypoglycemia

(both requiring assistance

and coma)

Data from the German DPV-Registry:

Change takes time – sometimes:

1.Increase of intensified insulin therapy after DCCT

2. Implementation of CGM/FGM

https://www.deutsche-diabetes-gesellschaft.de/fileadmin/Redakteur/Stellungnahmen/Gesundheitspolitik/20181114gesundheitsbericht_2019.pdf

66.715 Patients with Type 1 Diabetes

Age ≤ 20 years, diabetes duration > 1 year

Year of Treatment

Pe

rce

nt

Population-based cohort study conducted between January

2011 and December 2015 in 446 diabetes centers participating

in the Diabetes Prospective Follow-up Initiative in Germany,

Austria, and Luxembourg. Of 30 579 patients (mean age, 14.1

years [SD, 4.0]; 53% male), 14 119 used pump therapy

(median duration, 3.7 years) and 16 460 used insulin injections

(median duration, 3.6 years). Patients using pump therapy (n =

9814) were matched with 9814 patients using injection therapy

Registry data: Pumps

lower risk for

hypoglycemia and DKA

Pediatric CSII Germany CSII Europe

Regional differences in CSII use

Bohn B, et al. Exp Clin Endocrinol Diabetes 2016;124:111–119.

Low Middle High

Pozilli P, et al. Diabetes Metab Res Rev 2016; 32: 21–39.

The Hvidøre-Group

Are All Pediatric Diabetes Teams the Same ?

Are There Center Differences ?

Hvidoere: Significant differences in avarage HbA1c betweenleading 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

mean HbA1c (year 2001,adjusted for age, duration and gender) 8.62 ±0.03 %

center number

• Belgium

• Canada

• Denmark

• Finland

• France

• Germany

• Italy

• Japan

• Macedonia

• Netherlands

• Norway

• Portugal

• Spain

• Sweden

• Switzerland

• U.K.

• U.S.A.

HVIDOERE (2007)2 N=2,100 8.2%

SEARCH (2009)3 N=2,999 8.3%

1. Danne et al. (2001) Diabetes Care

2. de Beaufort et al. Diabetes Care 2007;30:2245–50;

3. Petitti et al. J Pediatr 2009;155:668–72

HbA1c-Targets of individual team members and average HbA1c at the centerSwift et al. Ped Diabetes (2012) 13

<7.0 7-7.4 7.5-7.9 8-9.0 No known

target Average center

HbA1c 100.0 7.40

100.0 7.58

20.0 40. 40.0 7.68

100.0 7.74

16.7 83.3 7.80

57.1 42.9 7.89

52.4 42.9 4.8 8.00

100. 8.02

100.0 8.08

60.0 40.0 8.18

40.0 40.0 10.0 10.0 8.23

33.3 44.4 22.2 8.24

20.0 60.0 20.0 8.27

60.0 20.0 20.0 8.36

80.0 20.0 8.45

20.0 20.0 60.0 8.59

33.3 44.4 22.2 8.76

100.0 8.82

75.0 25.0 8.83

Glycemic Targets

Wednesday 2:00 – 3:00 p.m.

Team meeting

SWEET: Vision

and Mission

worldwide

• International network of Centers of Reference for pediatric diabetes

• Initiated with the support of the EU Public Health Program in 2006 now a registered charity with formal ties to ISPAD

• Based on agreed standards of care, criteria for certification, international guidelines and quality control

• including peer review (audit) and

• data collection

www.sweet-project.org

Establishing Centers of Reference (CoR) & Collaborative Centers, Benchmarking and

Joint Scientific Projects

SWEETBASE

located at the

University of

Ulm/Germany

R. Holl and his team

Local

IT-system

Benchmarking report

Local

database

National

databases

DPV-

system

Research/Publications

Anonymized longitudinal data registry for

quality improvement and science

20

A unique patient identifier characterises each patient

- to follow the patient longitudinally

- to allow feedback on completeness and validity

- to allow feedback on study participation

Data are not personalized (no names, adresses,

phone-numbers, DOB etc), so no identification of

patients and no direct contact is possible

SWEET Data are pseudonymized data:

DPV Software for SWEET

• DPV is developed at Ulm University and is available free of charge for members of the SWEET group

• SWEET-DPV is an electronic data based documentation software for all forms of diabetes for both children and adults. Similar to an electronic medical record, relevant data pertaining to diabetes is documented only once and is available for numerous purposes

• SWEET-DPV is available in English• German

• French

• Greek

• Portuguese

• Spanish

• Polish

SWEET Growth

13 23 32 3957

7384

121145

2011 2012 2013 2014 2015 2016 2017 2018 2019

Number of centers in SWEET

Number of centers

Current database:

• 145 centers from 5 continents

• Database with over 57.000 patients

Learning from

Current SWEET database 2019

Current SWEET database 2019

Demographic characteristics: all patients

Longitudinal change: percentage of patients using

CGM/FGM-Technology

HbA1c_MedianofMEDIANpercentre_allAge_RAW.xls

7.057.20 7.30 7.30 7.30 7.40

7.55 7.55 7.60 7.65 7.70 7.70 7.73 7.80 7.90 8.00 8.00 8.10 8.108.30

8.50 8.50 8.60

9.15

0.00

1.00

2.00

3.00

4.00

5.00

6.00

7.00

8.00

9.00

10.00

S 10004 n=18

F 10005 n=171

J 10010 n=75

C 10014 n=223

N 10021 n=768

K 10009 n=243

Q 10008 n=429

A 10018 n=440

W 10003 n=541

B 10012 n=198

M 10001 n=236

D 10013 n=431

G 10020 n=359

L 10017 n=215

O 10011 n=402

R 10006 n=1177

E 10023 n=17

P 10015 n=487

H 10019 n=211

E 10022 n=125

I 10007 n=197

U 10016 n=386

D 10024 n=160

T 10002 n=717

Hb

A1

c (

%)

2012

7.5%

SWEET improvements in HbA1c

2018

7.8%

0.3% 0.3%0.8%

2.0%

1.1% 0.9% 1.1%0.8% 0.6%

1.1%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

perc

enta

ge o

f all p

atie

nts

0.9%

2.8%

7.1%

9.9%10.5%

7.6%

5.1%

3.2% 3.2%

5.4%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

perc

enta

ge o

f all p

atie

nts

0.3%

1.2%

4.9%

7.6%

6.5%

4.6%

1.5%

0.8%0.3% 0.3%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

perc

enta

ge o

f all p

atie

nts

0.0% 0.0%

1.9%1.2%

2.6%

0.8%0.5%

0.2% 0.0% 0.2%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

perc

enta

ge o

f all p

atie

nts

age: 0 - 6 y age: 6 - 12 y

age: 12 - 18 y age: > 18 y

0.2% 0.0%

1.4%

3.2% 3.1% 2.9%2.3%

0.9%1.5%

1.9%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

perc

enta

ge o

f all p

atie

nts

0.0%0.5%

4.0%

5.7%6.3%

5.2%

2.6%2.2% 2.2%

2.9%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

perc

enta

ge o

f all p

atie

nts

1.1%

2.2%

7.7%

9.7%10.3%

5.1%

2.5%

1.5%

0.5%

1.9%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

perc

enta

ge o

f all p

atie

nts

0.3%

1.7% 1.5%2.0%

0.9%0.6% 0.8%

0.3%0.0%

0.3%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

perc

enta

ge o

f all p

atie

nts

duration under 1 year duration 1 – 5 years

duration 5 – 10 yearsduration over 10 years

Distribution of our center HbA1c:

Relative to age and diabetes duration

Selected period 01/01/2017 - 31/12/2017

1.5%

4.3%

14.7%

20.7% 20.7%

13.9%

8.2%

4.9%

4.2%

6.9%

0%

5%

10%

15%

20%

25%

< 6.0 6.0 - 6.4 6.5 - 6.9 7.0 - 7.4 7.5 - 7.9 8.0 - 8.4 8.5 - 8.9 9.0 - 9.4 9.5 - 9.9 > 10.0

percentage

of all patie

nts

overall

BMI-SDS: T1DM, patients 0-18y,

WHO 2007 reference

Comparison

How is my center

doing compared to

others ?

Trend

How is my center

doing compared to two

years ago ?

Benchmarking as an instrument of change

Prevention: we see patients every 8 to 6 weeks and intervene

earlyAbove German average (3.4) outpatient visits per patient per year (5.9)

outpatient visits per patient per year

Treatment year

Treatment year

Take home messages: Are European Kids Any

Different ?

• Also in Europe pediatric patients have particular difficulties

achieving good glycemic control

• Evidence linking interventions with health outcomes is the basis

for good health care decision making.

• Using national or international registry data like SWEET shows

how the widespread use of electronic health records allows

analysis of real world data, benchmarking and quality

improvement worldwide

• Eventually this may harmonize care and improve outcomes in

pediatric diabetes

Becoming part of SWEETwww.sweet-project.org