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PubMed | University Hospital Gasthuisberg, Ludwig Maximilians University of Munich, Karolinska Universitetssjukhuset, Institute Salud Musculoesqueletica and 17 more.
Type: | Journal: Annals of the rheumatic diseases | Year: 2016

To develop standards and recommendations for transitional care for young people (YP) with juvenile-onset rheumatic and musculoskeletal diseases (jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology; (2) a systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes; (3) setting the framework, developing the process map and generating a first draft of standards and recommendations; (4) further iteration of recommendations; (5) establishing consensus recommendations with Delphi methodology and (6) establishing standards and quality indicators. The final consensus derived 12 specific recommendations for YP with jRMD focused on transitional care. These included: high-quality, multidisciplinary care starting in early adolescence; the integral role of a transition co-ordinator; transition policies and protocols; efficient communications; transfer documentation; an open electronic-based platform to access resources; appropriate training for paediatric and adult healthcare teams; secure funding to continue treatments and services into adult rheumatology and the need for increased evidence to inform best practice. These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for YP with jRMD based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.

Schmeling H.,University of Calgary | Minden K.,Childrens University Hospital Charite | Foeldvari I.,Hamburg Center for Paediatrics and Adolescence Rheumatology | Ganser G.,North Western German Center for Rheumatology and Orthopaedics | And 2 more authors.
Arthritis and Rheumatology | Year: 2014

Objective. To evaluate the efficacy and safety of adalimumab in patients with juvenile idiopathic arthritis (JIA). Methods. Baseline demographic and clinical characteristics and disease activity parameters were prospectively documented in the German Biologics JIA Registry. Efficacy was determined using the American College of Rheumatology (ACR) Pediatric (Pedi) response criteria and the Juvenile Arthritis Disease Activity Score based on a 10-joint count (JADAS-10). Safety assessments were based on adverse event reports from the responsible physician. Results. Two hundred eighty-nine patients with a total of 1,046 visits were identified (435.7 patient-years). A high proportion of patients demonstrated a significant response to treatment, with a marked decrease in the JADAS-10 score in both the biologics-naive group (which consisted of patients who had not received therapy with a biologic agent prior to initiation of adalimumab) and the biologic-switcher group (which consisted of patients who had been treated with a different biologic agent prior to initiation of adalimumab). The median JADAS-10 score at treatment start was significantly higher in the biologics-naive group than in the biologic-switcher group (12.9 versus 8.5; P = 0.00044), although the score in the biologics-naive group was lower over the course of adalimumab treatment. ACR Pedi 30, 50, 70, and 90 scores were achieved in 63.4%, 61.0%, 48.8%, and 34.2% of biologics-naive patients, respectively, at 6 months of treatment, while ACR Pedi 30, 50, 70, and 90 scores were achieved in 47.6%, 38.1%, 21.9%, and 15.2% of biologic-switcher patients, respectively. Forty-eight patients experienced 222 adverse events (50.9 per 100 patient-years). Eleven were reported as serious (2.5 per 100 patient-years). No malignancies were observed during adalimumab exposure. There were 16 uveitis flares in 11 patients. Treatment was discontinued in 58 patients for the following reasons: inefficacy 11.1%, adverse events 5.2%, remission 4.5%, patient request 11.8%, and other reasons 7.9%. Conclusion. Adalimumab appears to be highly effective in children and adolescents with JIA who have been previously treated with biologic agents and in children and adolescents who switched biologic agents. The treatment is safe and its efficacy is similar to that of other biologic agents used to treat JIA. Few patients discontinued therapy due to intolerance or inefficacy. © 2014, American College of Rheumatology.

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