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SP0014 Data collection for adolescents with arthritis: How to make it cool
  1. K. Minden
  1. Epidemiology unit, German Rheumatism Research Centre Berlin, Berlin, Germany

Abstract

Treatment strategies for patients with juvenile idiopathic arthritis (JIA) have tremendously changed during the past decade. Today, children and adolescents with JIA are treated earlier in the disease course with disease modifying antirheumatic drugs (DMARDs) and in particular increasingly more often with biologics. Their successful use in patients failing conventional DMARD therapy has led to a shift in the paradigm of arthritis treatment. More ambitious outcomes such as elimination of any inflammation, normalisation of short- and long-term function, and achievement of normal growth, physical and psychosocial development are new priorities for rheumatologists and patients. However, information on whether the new treatment strategies have actually resulted in better long-term outcomes of patients can only by gained by a follow-up of patients beyond adolescence.

However, patient follow-up into adulthood, at least data collection of patients in their early adult years, is a challenge. Patients of this age have to cope with many developmental tasks. They move from school to work, move out from family home, move forward into an independent life, and have to move from paediatric to adult care. In these times, the rheumatic disease is understandably often not in the focus of patients. Thus, rheumatologists are attended not regularly or not at all, not to mention that about half of all JIA patients enter adulthood without active disease.

The lecture will give an example on how to collect data for adolescents and young adults with arthritis. This will be exemplified by a biologic follow-up register. Therein about 700 adult patients have been meanwhile observed who were formerly included in the Biker register and ever treated with a biologic drug or methotrexate. The register differs in its monitoring from others because it is patient-oriented. Its advantages and disadvantages will be discussed. The primary aim of this register is to examine the long-term safety of anti-rheumatic drugs. In addition to serious adverse events/adverse event capture, the register shows actual drug exposure, medication switches and the reason(s) for drug change. Moreover, effectiveness parameters such as measures of quality of life, functional status, disease activity, co-morbidity, and employability are recorded. Selected outcomes will be presented.

Summarizing, the methods and usability of a national adult JIA biologic register will be demonstrated. Such a register integrated with other national or international registers (e.g. Pharmachild) has the potential to provide effective mechanism for monitoring the long-term safety of therapies and to provide data for much needed clinical, cost-effectiveness, and health service research.

Disclosure of Interest K. Minden Grant/Research support from: Pfizer

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