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OP0345-PARE Growing up with arthritis – yes we can! a project of deutsche rheuma-liga in co-operation with the german arthritis research center. with financial support by the german federal ministry of health
  1. K Cattelaens
  1. Deutsche Rheuma-Liga Bundesverband E.V., Bonn, Germany

Abstract

Background Every third young person with arthritis in Germany stops therapy when he or she enters adult care! Young people with arthritis have to travel long distances to care facilities, which are specialized in transition (about 30 throughout Germany). Because there are too few rheumatologists adults with arthritis often have to wait long for a consultation. Too few doctors have experience with treating young persons with arthritis. The situation of young persons with arthritis results in little knowledge about the condition – only every second young person knows their correct diagnosis. Parents manage everything – only every 5th young person up to 17 years has been alone with their doctor without their parents. Timely and comprehensive support is lacking.

Objectives Supported by the health ministry and in cooperation with the German Arthritis Research Center the project started in 2014. As a first step the need for support for young person with arthritis was explored. It took two years to develop a pilot project with transition peers, a homepage, camps and information material for parents and doctors. The main goal of the project is to reduce the number of young persons who discontinue care because of the necessary change from children's care to adult care.

Methods Ten transition peers have been trained for providing support (telephone, online, personal). An online information platform www.mein-rheuma-wird-erwachsen.de(my arthritis is growing up!) was created, filled with the experiences of the peers, information and quizzes and contact offerings. Camps especially for young persons growing up with arthritis took place. For the parents information material were developed and a seminar: learn to let go! is offered to them. The transition peers are going to doctors congresses to spread information material and to present the homepage.

Results An evaluation of the project is carried out by the German Arthritis Research Center. The online information platform is accepted, it had more than 10.000 visitors during the first year. The young users like the content of the homepage, the transition peers are accepted by the young people as well as by the doctors.

Conclusions The model project is running for three years – from 2014 until the end of 2017. A subsequent project will focus on the communication between doctors and young patients and should continue the new activities for the young persons with arthritis, their parents and the doctors.

References

  1. In 2016, the German rheumatology newspaper – “Zeitschrift für Rheumatologie” Nr. 6 /2016, Page 635f reported on the project with the title “Transition from pediatric to adult rheumatological care” and about the special offers from Deutsche Rheuma-Liga by Prof. Kirsten Minden and Martina Niewerth.

References

Disclosure of Interest None declared

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