54
Kirsten Minden German Rheumatism Research Centre University Medicine Charité Berlin ENCA-Meeting Genoa: September 30th 2016 Transition and problems in transition in Germany

ENCA 2016 - Genoa - Kirsten Minden

Embed Size (px)

Citation preview

Page 1: ENCA 2016 - Genoa - Kirsten Minden

Kirsten Minden

German Rheumatism Research CentreUniversity Medicine Charité Berlin

ENCA-Meeting Genoa: September 30th 2016

Transition and problems in transition in Germany

Page 2: ENCA 2016 - Genoa - Kirsten Minden

Germany - Facts

Member of the EU since 1958 Federal government led by

Christian and Social Democrats under Chancellor Angela Merkel

Compulsory health insurance

Health care is financed from the premiums paid by insured employees and employers, and from tax revenue surpluses

Page 3: ENCA 2016 - Genoa - Kirsten Minden

Source: Health at a Glance: Europe 2014, OECD

Health expenditure per capita

Germany - Facts

Page 4: ENCA 2016 - Genoa - Kirsten Minden

N = 80.6 Mio

Pyramid in 2016

men (in thousand) women (in thousand)

Age in years

Juvenile arthritis, CTD/vas-culitis, autoinflammatory disease → ≈17,000

Rheumatoid arthritis500,000Spondyloarthritis 630,000CTD/vasculitis 70,000Others210,000→ ≈1.5 million

… in adulthood

… in childhood/adolescence

13 million up to the age of 18

Germany - Facts

Population

Page 5: ENCA 2016 - Genoa - Kirsten Minden

Juvenile idiopathic arthritis (JIA)

CTDVasculitis

Autoinflam-matory diseases

83% 3

%

11%

Data source: National paediatric rheumatologic

database

Diagnoses spectrum

Age groupsAdolescents10-14 years15-19 yearsYoung adults 20-24 years

Approximately 10,000 affected young people nationwide

Young people with juvenile rheumatic diseases

Page 6: ENCA 2016 - Genoa - Kirsten Minden

now2000

1990

Transition in rheumatology in Germany

Assessment of the health care situation of young people with JA during transition

2010

2030

ENCA meeting, Genoa

Page 7: ENCA 2016 - Genoa - Kirsten Minden

now2000

1990

Transition in rheumatology in Germany

2010

2030

Plenary session on transition for adult rheumatologists at the national rheumatology congress in 2005

ENCA meeting, Genoa

Assessment of the health care situation of young people with JA during transition

Page 8: ENCA 2016 - Genoa - Kirsten Minden

now2000

1990

Transition research in rheumatology in Germany

2010

2030

3-year-follow-up-study of 250 patients leaving paediatric rheumatologic care

Assessing the health status of severely affec-ted JIA patients from the biologic registry BiKeR during transition

Assessment of health service utilisation by young people using a large claims dataset

Assessment of the health care situation of young people with JA during transitionPlenary session on transition for adult rheumatologists at the national rheumatology congress in 2005Inside the

specialised care setting

On popu-lation level

Page 9: ENCA 2016 - Genoa - Kirsten Minden

37%63%

in adult specialty care without adult

rheumatologic care

three years after the patients had left paediatric rheuma-tologic care

Proportion of patients (%)

Health care utilisation of young people with JIA

Data source: project focus transition

Page 10: ENCA 2016 - Genoa - Kirsten Minden

now2000

1990

Transition research in rheumatology in Germany

2010

2030

3-year-follow-up-study of 250 patients leaving paediatric rheumatologic care

Assessing the health status of severely affec-ted JIA patients included in the biologic registry during transition

Assessment of health service utilisation by young people using a large claims dataset

Assessment of the health care situation of young people with JA during transitionPlenary session on transition for adult rheumatologists at the national rheumatology congress in 2005Inside the

specialised care setting

On popu-lation level

Page 11: ENCA 2016 - Genoa - Kirsten Minden

Health care utilisation of young people with JIA

Data source: claims data from 2008 to 2014

Age in years16

20

18

Continuous follow-up

Patients with JIA

(N=256)

Patients in adult specialty care

31%

Page 12: ENCA 2016 - Genoa - Kirsten Minden

Health care utilisation of young people with JIA

Data source: claims data from 2008 to 2014

Age in years16

20

18

Continuous follow-up

Patients on DMARDs (N=103)

Patients with JIA

(N=256)

Patients in adult specialty care

31%

DMARDs = Disease Modi-fying Antirheumatic Drugs

(e.g., methotrexate, biologics)

Page 13: ENCA 2016 - Genoa - Kirsten Minden

Health care utilisation of young people with JIA

Data source: claims data from 2008 to 2014

Age in years16

20

18

Continuous follow-up

Patients in adult specialty care

51%

Patients in GP care alone 31%

Patients on DMARDs (N=103)

Patients with JIA

(N=256)

Patients in adult specialty care

31%

Page 14: ENCA 2016 - Genoa - Kirsten Minden

Health care utilisation of young people with JIA

Data source: claims data from 2008 to 2014

Age in years16

20

18

Continuous follow-up

Patients in adult specialty care

51%

Patients in GP care alone 31%

Patients on DMARDs (N=103)

Patients with JIA

(N=256)

Patients in adult specialty care

31%

DMARDs in 79% DMARDs in 22%

Page 15: ENCA 2016 - Genoa - Kirsten Minden

Reasons for deficits in YP´s health care provision

Lack of government supported transition policies or strategies

Page 16: ENCA 2016 - Genoa - Kirsten Minden

Health system strategies supporting transition

No policies or strategies

No policies or strategiesNo policies or

strategies

No policies or strategies

2008 Transition sup- port programme

2008-11 funding to deve- lop transition

initiatives in 11 regions

Documents outlining the need„Better Outcomes Better Futures: The National Po-licy Framework for Chil-dren and Young People 2014-2020“

Hepburn et al. Arch Dis Child 2015;100:559.

Page 17: ENCA 2016 - Genoa - Kirsten Minden

Reasons for deficits in YP´s health care provision

Shortage of adult rheumatologists

Lack of government supported transition policies or strategies

Page 18: ENCA 2016 - Genoa - Kirsten Minden

Man power in rheumatology in Germany

Target number

Actual number

Adult rheuma-tologists

1,350(2:100,00

0)750

Number of specialists needed for outpatient care

Memorandum DGRh 2008; Federal Medical Association 2015; BVOU 2016.

Page 19: ENCA 2016 - Genoa - Kirsten Minden

Man power in rheumatology in Germany

Target number

Actual number

Adult rheuma-tologists

1,350(2:100,00

0)750

Paediatric rheumatologists

125(1:100,00

0)164

Number of specialists needed for outpatient care

1.3 / 100,000

International comparisonPaediatric rheumatologists/100,000 children Canada 0.83 at 15 sites

USA 0.53 at 42 sitesNL 0.47 at 7 sites

Page 20: ENCA 2016 - Genoa - Kirsten Minden

Man power in rheumatology in Germany

Actual number

Paediatric rheumatologists

164

Number of specialists

n = 31n = 31

Other children hospitals

University hospitals

Self-employed paediatri-cians

n = 30

Page 21: ENCA 2016 - Genoa - Kirsten Minden

0% 20% 40% 60% 80% 100%strongly agree somewhat agree strongly disagree

Survey among 250 young people with rheumatic diseases two years after leaving paediatric specialty care

well prepared

well planned

at the right time

generally satisfactory

Reality of transitional care in Germany

The transfer to adult care was ...

Data source: project focus transition

Page 22: ENCA 2016 - Genoa - Kirsten Minden

0% 20% 40% 60% 80% 100%strongly agree somewhat agree strongly disagree

Survey among 250 young people with rheumatic diseases two years after leaving paediatric specialty care

well prepared

well planned

at the right time

generally satisfactory

Reality of transitional care in Germany

The transfer to adult care was ...

Data source: project focus transition

Page 23: ENCA 2016 - Genoa - Kirsten Minden

0% 20% 40% 60% 80% 100%strongly agree somewhat agree strongly disagree

Survey among 250 young people with rheumatic diseases two years after leaving paediatric specialty care

well prepared

well planned

at the right time

generally satisfactory

Reality of transitional care in Germany

The transfer to adult care was ...

Data source: project focus transition

Page 24: ENCA 2016 - Genoa - Kirsten Minden

0% 20% 40% 60% 80% 100%strongly agree somewhat agree strongly disagree

Survey among 250 young people with rheumatic diseases two years after leaving paediatric specialty care

well prepared

well planned

at the right time

generally satisfactory

Reality of transitional care in Germany

The transfer to adult care was ...

Data source: project focus transition

Page 25: ENCA 2016 - Genoa - Kirsten Minden

31%

20% 33%47%

Before transfer

Before and up to two years after

transfer Unknown

Direct communication between paediatric and adult rheumatologist

Reality of transitional care in Germany

Data source: project focus transition

Page 26: ENCA 2016 - Genoa - Kirsten Minden

Reasons for deficits in YP´s health care provision

Shortage of adult rheumatologists Lack of transitional care programmes at rheumatologic

centres

Lack of government supported transition policies or strategies

Page 27: ENCA 2016 - Genoa - Kirsten Minden

99

31 10

no special serviceno transition policy, but interest in developing one

standard, informal procedure in transitioning patients, but no written

transition policy

written transition policy

Survey among 100 peadiatric rheumatology centres, where members of the Society of Paediatric Rheumatogy are working

Reality of transitional care in Germany

Data source: GKJR Survey 2016

Page 28: ENCA 2016 - Genoa - Kirsten Minden

Legend: Quality indicators for paediatric rheumatology sites

Certified training facility for paediatric rheumatology

More than 200 children and adolescents with an inflammatory rheumatic disease are treated at this site Multiprofessional team available

Inpatient care available

Joint transition clinic and/or written transition policy

Map showing paediatric rheumatology care services

Website of the Society of Paediatric Rheumatology

Page 29: ENCA 2016 - Genoa - Kirsten Minden

Date source: GKJR-Survey 2016

Specific icon

joint transition clinics and/or a written transition policy(N=28)

Map on http://www.gkjr.de/

Paediatric rheumatologic sites with …

Page 30: ENCA 2016 - Genoa - Kirsten Minden

Published transitional care programmes in Europe

United KingdomGrowing up and moving on

MAGICCReady Steady Go

GermanyBerlin Transition Programme

BelgiumDON´T RETARD

NetherlandsTransition clinic

On your own feet ahead

Clemente et al. Semin Arthritis Rheum. 2016

Jun 9.

Page 31: ENCA 2016 - Genoa - Kirsten Minden

Generic programme developed at the DRK hospital Berlin

Financed by statutory health insurances (e.g., TKK, AOK Nordost und BKK VBU)

Open for young people aged 16-20 years with rheumatic diseases from 8 Federal states

Berlin transition programme

Müther. http://www.drk-kliniken-berlin.de

Page 32: ENCA 2016 - Genoa - Kirsten Minden

Key elements Central case management Information flyer for physicians,

teens/ parents  2 transition clinics before and 1

transition clinic after transfer Questionnaire for teens/parents T-booklet

Berlin transition programme

Müther. http://www.drk-kliniken-berlin.de

25 patients with JIA included since 2013, no data on its effectiveness are available.

Page 33: ENCA 2016 - Genoa - Kirsten Minden

Reasons for deficits in YP´s health care provision

Shortage of adult rheumatologists Lack of transitional care programmes at rheumatologic

centres Lack of financial incentives and institutional support for

transition services

Lack of government supported transition policies or strategies

Page 34: ENCA 2016 - Genoa - Kirsten Minden

Reasons for deficits in YP´s health care provision

Shortage of adult rheumatologists Lack of transitional care programmes at rheumatologic

centres

Lack of awareness of the necessity of ongoing care by the YP

Lack of financial incentives and institutional support for transition services

Lack of government supported transition policies or strategies

Page 35: ENCA 2016 - Genoa - Kirsten Minden

Vulnerable phase of adolescence/young adulthood

Young people

Page 36: ENCA 2016 - Genoa - Kirsten Minden

Reasons for deficits in YP´s health care provision

Shortage of adult rheumatologists Lack of transitional care programmes at rheumatologic

centres

Dissatisfaction by the YP with adult health care

Lack of awareness of the necessity of ongoing care by the YP

Lack of financial incentives and institutional support for transition services

Lack of government supported transition policies or strategies

Page 37: ENCA 2016 - Genoa - Kirsten Minden

44%

79%

80%

68%

74%

32%

50%

53%

41%

44%

33%

53%

67%

51%

56%

getting an appointment,if urgently needed

the time that the doctor has for me

the knowlegde of the doctor about my illness

taking me seriously

answering questions

Paediatric rheumato-logy, at transfer

Adult rheumatology, 1 year after transfer

Adult rheumatology, 2 years after transfer

Satisfaction with specialised care by young people

in terms of …

Data source: project focus transition

Page 38: ENCA 2016 - Genoa - Kirsten Minden

Reasons for deficits in YP´s health care provision

Shortage of adult rheumatologists Lack of transitional care programmes at rheumatologic

centres

Dissatisfaction by the YP with adult health care

Lack of awareness of the necessity of ongoing care by the YP

Lack of financial incentives and institutional support for transition services

Lack of resources, unmet education and training needs by health professionals

Lack of government supported transition policies or strategies

Page 39: ENCA 2016 - Genoa - Kirsten Minden

2000

1990

Transition in rheumatology in Germany

2010

2030

5 Paediatric rheumatologists

7 Adult rheumatologists1 Psychologist

1 Health scientist2 Patient representativesScientific societies for paediatric and adult rheumatology

Working group on transition

2014

Several studies on transitional care → Deficits in health care services

Page 40: ENCA 2016 - Genoa - Kirsten Minden

Training course:„Paediatric rheumatology meets adult rheumatology“

Topics Juvenile rheumatic diseases Adolescence/young adulthood Social support measures ...

First course at the annual rheuma-tology meeting in September 2016

Transition resources for rheumatology

= national rheumatology training academy

Page 41: ENCA 2016 - Genoa - Kirsten Minden

Transition resources for rheumatology

Flyer → Here we go …

Information on disease

Links

Page 42: ENCA 2016 - Genoa - Kirsten Minden

Generic website for patients and parents: Ready for transfer?

Transition resources for rheumatology

www.between-kompas.de

Page 43: ENCA 2016 - Genoa - Kirsten Minden

https://mein-rheuma-wird-erwachsen.de/

New website for young people Project: Transition – Empowering young people with rheumatic disease for the transition to adult care

Transition resources for rheumatology

Page 44: ENCA 2016 - Genoa - Kirsten Minden

Transition resources for rheumatology

Transition-Peers 10 young women with rheumatic diseases, aged 20-32 yearsSpecifically trained by the Rheuma-Liga (physicians, psychologists, social worker)

Page 45: ENCA 2016 - Genoa - Kirsten Minden

Transition resources for rheumatology

Transition-Peers Tell their own stories Inform about transition Promote autonomy and

self-management of disease

Provide contacts, tips Answer to questions

Page 46: ENCA 2016 - Genoa - Kirsten Minden

Transition resources for rheumatology

How it´s done

Page 47: ENCA 2016 - Genoa - Kirsten Minden

Checklist

Disease, treatment Disease management Healthy lifestyle,

contraception Mobility Future planning,

perspectives Social network, resources Transfer readiness

Transition resources for rheumatology

Page 48: ENCA 2016 - Genoa - Kirsten Minden

Questionnaire for transition clinic

Inquires patients´ disease knowledge,readiness and needs

Name of disease Treatment Transition

competence questionnaire

Needs

Transition resources for rheumatology

Page 49: ENCA 2016 - Genoa - Kirsten Minden

Condition fact sheet

Transition resources for rheumatology

Page 50: ENCA 2016 - Genoa - Kirsten Minden

Feed-back form for paediatric rheumatologist

Transition resources for rheumatology

Confirming transfer into adult practicereceipt of referral letter, imaging, etc.

Page 51: ENCA 2016 - Genoa - Kirsten Minden

2015

1) Transition-camp at Bodenseeonce a year in springsince 2010

2) Transition-camp organised by the Rheuma-Liga, in autumn Helmstedt 07./08.10.2016

2010

Transition resources for rheumatology

Page 52: ENCA 2016 - Genoa - Kirsten Minden

2000

1990

Transition in rheumatology in Germany

Several studies on transitional care → Deficits in health care services

2010

2030

Working group

on transition

now

Various resources for patients and health care providers available, more in development

Page 53: ENCA 2016 - Genoa - Kirsten Minden

Paediatric rheumatology

Adult rheuma-

tology

Transition

Page 54: ENCA 2016 - Genoa - Kirsten Minden

Perspective

2000

now1980

2030

1960

many thanks for listening