Pediatric Rheumatology Online Journal

Vol 2, No. 2   2004

http://www.pedrheumonlinejournal.org

SPECIAL ARTICLE

Pediatric Rheumatology in Germany: A new model to set up a pediatric rheumatology service in Germany

Ivan Foeldvari

Allgemeines Krankenhaus Eilbek, Friedrichsbergerstr. 60, 22081 Hamburg, Germany

Keywords:

Pediatric rheumatology outpatient service

Contact:

Ivan Foeldvari, MD, Senior consultant in Pediatric Rheumatology

Allgemeines Krankenhaus Eilbek

Friedrichsbergerstr. 60, 22081 Hamburg, Germany

Tel: 00 49 40 2092- 3694

Fax: 00 49 40 2092-3693

E-Mail: Sprechstunde@kinderrheumatologie.de

Until recently pediatric Rheumatology was not an official subspecialty in Germany. It was not until 2003 that the Annual Federal Congress of Physicians voted for the acceptance of pediatric rheumatology as a “subspecialty” and the beginning of pediatric rheumatology fellowship in Germany. The curriculum for the fellowship closely resembles the suggested curriculum of the European Pediatric Rheumatology Society, with a suggested length of 18 months for training. However, the local state medical councils have not acted on this national regulation. Pediatric rheumatology as an official subspecialty exists more in theory than practice. Official training programs for pediatric rheumatology are just in planning phase.

Historically, the care for children and adults with rheumatic diseases in Germany was based in a large, specialized rheumatology hospital, not unlike the Taplow model in the UK. In this first medical facility, inpatient care dominated the services, with only limited outpatient care. Professor Stoeber, who was the first pediatrician in Germany, established in 1952 the first specialized pediatric inpatient unit for pediatric rheumatology in Garmisch-Partenkirchen. She was initially sensitized to this field through caring for children with rheumatic fever.

This unit was established with financial support from the Marshall Plan in post-World War II Germany. Professor Stoeber became very active in fund-raising to develop her program. At its onset, the unit had beds for 20 inpatients with rheumatic diseases, but grew over the next few years to the largest inpatient unit in Germany for pediatric rheumatology with 116 inpatient beds. The mean time of hospitalization was 89 days in 1977 and decreased to 18.9 days in 1991. The hospital developed a large physical and occupational therapy program. The center also had its own parent support group. Research studies at the Garmisch-Partenkirchen pediatric rheumatology program included studying the first non-steroidal anti-inflammatory drugs available for the treatment of JCA and also participating in the first classification of juvenile chronic arthritis (1977- Oslo). This program collaboration with Taplow in England, and later with other pediatric rheumatology centers, evolved into EULAR/PRES/PRINTO. Dr. Stoeber fought for the acceptance of pediatric rheumatology in Germany. From 1978 to 1997, Prof. Truckenbrod further extended the development of the Garmisch-Partenkirchen clinic. In the 1980´s, university hospitals throughout Germany, and some city hospitals, established outpatient clinics, the emphasis began to shift from inpatient to outpatient pediatric rheumatology care.

My personal experience in the establishment of an outpatient program has been quite different from that of the wonderful Garmisch-Partenkirschen center. After completing my fellowship in Vancouver with R.E. Petty, I established the first pediatric rheumatology outpatient service at the University Children’s Hospital in Hamburg. Initially, the clinic grew slowly but, with time, local pediatricians, general practitioners and orthopedic colleagues referred increasingly more patients. The clinic has expanded from a one-afternoon-a-week service to a 5-afternoon-a-week service---with no end in sight. Unfortunately, the University Hospital did not have the funds to support a full time pediatric rheumatology service. Therefore, in cooperation with the local state health administration and the local parents' group, a “new way of service” was set up. I applied for a special license for an outpatient service which is reimbursed directly from the insurance companies, based on the number of patients seen, and the amount of service given. I function solely as a “pediatric specialist”. The special support given to adult rheumatology services is not yet extended to the pediatric rheumatology service. Our service covers its own costs, receiving no outside financial support form the state, national government or foundations.

This new outpatient clinic has moved to another location in Hamburg, and is now associated with the newly created “musculoskeletal center” of the city. In addition to our clinic this center has an adult rheumatology unit (in- and out-patient), an adult and pediatric orthopedic unit (in- and out-patient) and an orthopedic surgery unit. The pediatric rheumatology inpatients under 16 years of age can be admitted to the nearby University Children’s Hospital, where I am a consulting pediatric rheumatologist. Older adolescents are admitted to the adult rheumatology unit of the musculoskeletal center, where our outpatient service is based. There is coordination of special services at the University Children's Hospital and the musculoskeletal center, including a common uveitis clinic and orthodontic clinic, just to mention a few. A specialized, private occupational therapy unit is available only a half mile away, and is closely associated with the pediatric rheumatology unit. With the help of a research nurse who is based at the unit, the participation in national and international scientific clinical trials is possible. There is strong cooperation with the local parents' group, which includes educational programs and activities for patients and parents.

Currently, our unit follows over 2000 children with pediatric rheumatic diseases in a recruitment area of 6 million. Many of our patients travel up to three hours to reach the clinic, and the number of referrals and new patient consultations continues to grow. Thus, pediatric rheumatology in Germany is showing remarkable growth and progress. This subspecialty is now recognized and official fellowships are being established. Hopefully, the full acceptance of pediatric rheumatology as a subspecialty will help promote the further development of our subspecialty in Germany. I hope that the German experience of establishing pediatric rheumatology programs may help others to develop pediatric rheumatology clinics and services in countries where this subspecialty is not yet recognized.