This document summarizes transition and problems with transition in rheumatology in Germany. It finds that there are several reasons for deficits in healthcare provision for young people, including a shortage of adult rheumatologists, a lack of transitional care programs, and a lack of government policies to support transition. Research has found that many young people feel their transition to adult healthcare was not well-prepared or planned. Efforts are underway to address these issues through the development of transition resources and guidelines to improve coordination and continuity of care for young people living with rheumatic diseases.

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

2. 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

3. Source: Health at a Glance: Europe 2014, OECD
Health expenditure per capita
Germany - Facts

4. N = 80.6 MioPyramid in 2016
men (in thousand) women (in thousand)
Age in years
Juvenile arthritis, CTD/vas-
culitis, autoinflammatory
disease → ≈17,000
Rheumatoid arthritis 500,000
Spondyloarthritis 630,000
CTD/vasculitis 70,000
Others 210,000
→ ≈1.5 million
… in adulthood
… in childhood/adolescence
13 million up
to the age of 18
Germany - Facts
Population

5. Juvenile idiopathic
arthritis (JIA)
CTD
Vasculitis
Autoinflam-
matory
diseases
83%
3%
11%
Data source: National paediatric
rheumatologic database
Diagnoses spectrumAge groups
Adolescents
10-14 years
15-19 years
Young adults
20-24 years
Approximately 10,000
affected young people
nationwide
Young people with juvenile rheumatic diseases

6. now20001990
Transition in rheumatology in Germany
Assessment of the health care situation of
young people with JA during transition
2010 2030
ENCA meeting, Genoa

7. now20001990
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

8. now20001990
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 transition
Plenary session on transition for adult rheumatologists
at the national rheumatology congress in 2005
Inside the
specialised
care setting
On popu-
lation level

9. 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

10. now20001990
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 transition
Plenary session on transition for adult rheumatologists
at the national rheumatology congress in 2005
Inside the
specialised
care setting
On popu-
lation level

11. Health care utilisation of young people with JIA
Data source: claims data from 2008 to 2014
Age in years
16
20
18
Continuous
follow-up
Patients with JIA
(N=256)
Patients in adult
specialty care 31%

12. Health care utilisation of young people with JIA
Data source: claims data from 2008 to 2014
Age in years
16
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)

13. Health care utilisation of young people with JIA
Data source: claims data from 2008 to 2014
Age in years
16
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%

14. Health care utilisation of young people with JIA
Data source: claims data from 2008 to 2014
Age in years
16
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%

15. Reasons for deficits in YP´s health care provision
 Lack of government supported transition policies or strategies

16. Health system strategies supporting transition
No policies or strategies
No policies or strategies
No 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.

17. Reasons for deficits in YP´s health care provision
 Shortage of adult rheumatologists
 Lack of government supported transition policies or strategies

18. Man power in rheumatology in Germany
Target
number
Actual
number
Adult rheuma-
tologists
1,350
(2:100,000)
750
Number of specialists needed for outpatient care
Memorandum DGRh 2008; Federal Medical Association 2015;
BVOU 2016.

19. Man power in rheumatology in Germany
Target
number
Actual
number
Adult rheuma-
tologists
1,350
(2:100,000)
750
Paediatric
rheumatologists
125
(1:100,000)
164
Number of specialists needed for outpatient care
1.3 / 100,000
International comparison
Paediatric rheumatologists/100,000 children Canada 0.83 at 15 sites
USA 0.53 at 42 sites
NL 0.47 at 7 sites

20. Man power in rheumatology in Germany
Actual
number
Paediatric
rheumatologists
164
Number of specialists
n = 31
n = 31
Other children hospitals
University hospitals
Self-employed paediatri-
cians
n = 30

21. 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

22. 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

23. 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

24. 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

25. 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

26. 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

27. 9
9
31
10
no special service
no 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

28. 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

29. 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 …

30. Published transitional care programmes in Europe
United Kingdom
Growing up and moving on
MAGICC
Ready Steady Go
Germany
Berlin Transition Programme
Belgium
DON´T RETARD
Netherlands
Transition clinic
On your own feet ahead
Clemente et al.
Semin Arthritis Rheum. 2016 Jun 9.

31.  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

32. 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.

33. 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

34. 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

35. Vulnerable phase of adolescence/young adulthood
Young people

36. 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

37. 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

38. 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

39. 20001990
Transition in rheumatology in Germany
2010 2030
5 Paediatric rheumatologists
7 Adult rheumatologists
1 Psychologist
1 Health scientist
2 Patient representatives
Scientific societies for paediatric and
adult rheumatology
Working group on transition
2014
Several studies on transitional care
→ Deficits in health care services

40. 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

41. Transition resources for rheumatology
Flyer → Here we go …
Information
on disease
Links

42. Generic website for patients and parents: Ready for transfer?
Transition resources for rheumatology
www.between-kompas.de

43. 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

44. Transition resources for rheumatology
Transition-Peers 10 young women with rheumatic diseases,
aged 20-32 years
Specifically trained by the Rheuma-Liga
(physicians, psychologists, social worker)

45. 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

46. Transition resources for rheumatology
How it´s done

47. Checklist
 Disease, treatment
 Disease management
 Healthy lifestyle,
contraception
 Mobility
 Future planning, perspectives
 Social network, resources
 Transfer readiness
Transition resources for rheumatology

48. Questionnaire for
transition clinic
Inquires patients´
disease knowledge,
readiness and needs
 Name of disease
 Treatment
 Transition competence
questionnaire
 Needs
Transition resources for rheumatology

49. Condition fact sheet
Transition resources for rheumatology

50. Feed-back form for paediatric
rheumatologist
Transition resources for rheumatology
Confirming
transfer into adult practice
receipt of referral letter, imaging,
etc.

51. 2015
1) Transition-camp at Bodensee
once a year in spring
since 2010
2) Transition-camp organised by
the Rheuma-Liga, in autumn
Helmstedt 07./08.10.2016
2010
Transition resources for rheumatology

52. 20001990
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

53. Paediatric
rheumatology
Adult
rheuma-
tology
Transition

54. Perspective
2000 now1980 20301960