Neuropediatrics 2016; 47 - P05-03
DOI: 10.1055/s-0036-1583668

Development of a MS-Network for Children and Adolescents in the Rhine-Ruhr Region

O. Aktas 1, R. Gold 3, C. Heyer 4, M. Karenfort 2, I. Kleiter 3, C. Lukas 5, T. Lücke 6, S. Lutz 7, U. Meier 8, 9, S. Mreyen 10, D. Pöhlau 1, K. Rostasy 12, U. Schara 7, S. Schipper 13, Ch. Thiels 6, K. von der Heiden 13
  • 1Klinik für Neurologie, Universitätsklinikum Düsseldorf:
  • 2Klinik für Neurologie, Katholisches Klinikum Bochum, St. Josef-Hospital Universitätsklinikum:
  • 3Institut für Kinderradiologie am St. Josef-Hospital, Katholisches Klinikum Bochum, St. Josef-Hospital Universitätsklinikum:
  • 4Klinik für Allgemeine Pädiatrie, Neonatologie und Kinderkardiologie, Neuropädiatrie, , Universitätsklinikum Düsseldorf:
  • 5Institut für Diagnostische und Interventionelle Radiologie und Nuklearmedizin, Katholisches Klinikum Bochum, St. Josef-Hospital Universitätsklinikum:
  • 6Klinik für Kinder- und Jugendmedizin, Neuropädiatrie, Katholisches Klinikum Bochum, St. Josef-Hospital Universitätsklinikum:
  • 7Zentrum für Kinder- und Jugendmedizin, Klinik für Kinderheilkunde I, Neuropädiatrie, Universitätsklinikum Essen
  • 8Berufsverband Deutscher Neurologen, Universitätsklinikum Essen
  • 9Neurocentrum am Kreiskrankenhaus Grevenbroich, Universitätsklinikum Essen
  • 10MedEcon Ruhr GmbH, Universitätsklinikum Essen
  • 11Kamillus-Klinik Asbach, Universitätsklinikum Essen
  • 12Vestische Kinder- und Jugendklinik Datteln, Klinik der Universität Witten/Herdecke, Zentrum für Neuropädiatrie, Universitätsklinikum Essen
  • 13DMSG-Landesverband NRW e.V, Universitätsklinikum Essen

Background/Purpose: Multiple sclerosis (MS) is the most common progressive neurological disease in young to middle adulthood. The realization, that the disease can also manifest itself before adulthood in children and adolescents, however, is rather new. This can result in diagnostic errors, administration of the wrong treatment, and, not uncommonly, in year-long medical odysseys—aside from the special psychosocial strains for the entire family system. Competent, interdisciplinary, and geographically proximate care is therefore urgently required.

Methods: With regard to content, the network will be supported by the competencies of neuropediatricians, neurologists, radiologists, psychologists, self-help groups, unions, and established, specialized practices in the Rhine-Ruhr region. At its inception in June of 2015, treatment and care guidelines for children and adolescents with MS were defined. In the currently running pilot phase that is set to last 2 years, it is planned to integrate further network partners. Agreements between the network partners ensure an interdisciplinary, guideline-compliant, and at the same time geographically local treatment and care of the affected children and adolescents, as well as their families.

Results: In the meetings of the network partners, the following goals were established and partially implemented:

  • Compiling of common benchmarks of quality

  • Connection of medical treatment with psychosocial help services

  • Creation of self-help services for children, adolescents, and parents

  • Provision of regional contact partners

  • Knowledge management of pediatric MS: Transition of the data to the MS-database of the DMSG Bundesverband.

  • Improvement of the transition

Conclusion: With this network, children and adolescents are provided with contact partners and places of treatment in their proximity. These are in regular contact with each other to make the severity of the disease and its outcomes more bearable—for children, as well as for parents!