ENCA 2016 - Genoa - Kirsten Minden
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Transcript of 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
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
Source: Health at a Glance: Europe 2014, OECD
Health expenditure per capita
Germany - Facts
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
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
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
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
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
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
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
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%
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)
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%
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%
Reasons for deficits in YP´s health care provision
Lack of government supported transition policies or strategies
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.
Reasons for deficits in YP´s health care provision
Shortage of adult rheumatologists
Lack of government supported transition policies or strategies
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.
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
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
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
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
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
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
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
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
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
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
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 …
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.
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
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.
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
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
Vulnerable phase of adolescence/young adulthood
Young people
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
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
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
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
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
Transition resources for rheumatology
Flyer → Here we go …
Information on disease
Links
Generic website for patients and parents: Ready for transfer?
Transition resources for rheumatology
www.between-kompas.de
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
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)
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
Transition resources for rheumatology
How it´s done
Checklist
Disease, treatment Disease management Healthy lifestyle,
contraception Mobility Future planning,
perspectives Social network, resources Transfer readiness
Transition resources for rheumatology
Questionnaire for transition clinic
Inquires patients´ disease knowledge,readiness and needs
Name of disease Treatment Transition
competence questionnaire
Needs
Transition resources for rheumatology
Condition fact sheet
Transition resources for rheumatology
Feed-back form for paediatric rheumatologist
Transition resources for rheumatology
Confirming transfer into adult practicereceipt of referral letter, imaging, etc.
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
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
Paediatric rheumatology
Adult rheuma-
tology
Transition
Perspective
2000
now1980
2030
1960
many thanks for listening