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      Transitional care for rheumatic conditions in Europe: current clinical practice and available resources

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          Abstract

          Objective

          To assess European pediatric rheumatology providers’ current clinical practices and resources used in the transition from child-centered to adult-oriented care.

          Methods

          European pediatric rheumatologists were invited to complete a 17-item anonymized e-survey assessing current transition practices, transition policy awareness, and needs in advance of the publication of EULAR/PReS recommendations on transition.

          Results

          The response rate was 121/276 (44%), including responses from 115 centers in 22 European Union countries. Although 32/121 (26%) responded that their centers did not offer transition services, the majority (99%) agreed that a formalized process in transitioning patients to adult care is necessary. A minority (<30%) of respondents stated that they have a written transition policy although 46% have an informal transition process. Designated staff to support transitional care were available in a minority of centers: nurse (35%), physiotherapist (15%), psychologist (15%), social worker (8%), and occupational therapist (2%). The existence of a designated team member to coordinate transition was acknowledged in many centers (64% of respondents) although just 36% use a checklist for young people as part of individualized transitional care.

          Conclusion

          This survey of European pediatric rheumatology providers regarding transitional care practices demonstrates agreement that transitional care is important, and wide variation in current provision of transition services exists.

          Electronic supplementary material

          The online version of this article (doi:10.1186/s12969-017-0179-8) contains supplementary material, which is available to authorized users.

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          Most cited references18

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          Interval estimation for the difference between independent proportions: comparison of eleven methods

          Several existing unconditional methods for setting confidence intervals for the difference between binomial proportions are evaluated. Computationally simpler methods are prone to a variety of aberrations and poor coverage properties. The closely interrelated methods of Mee and Miettinen and Nurminen perform well but require a computer program. Two new approaches which also avoid aberrations are developed and evaluated. A tail area profile likelihood based method produces the best coverage properties, but is difficult to calculate for large denominators. A method combining Wilson score intervals for the two proportions to be compared also performs well, and is readily implemented irrespective of sample size.
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            Prevalence and incidence of juvenile idiopathic arthritis: a systematic review.

            To conduct a systematic literature review on incidence and prevalence of juvenile idiopathic arthritis and to estimate these figures in Europe for 2010. Articles on incidence or prevalence of juvenile idiopathic arthritis were searched in Medline. Pooled incidence and prevalence were calculated overall, by gender, age, classification and arthritis categories. We used the available age and gender pooled rates to standardize the incidence and prevalence on the 2010 European population and estimate the number of cases in Europe in 2010. Forty-three articles (33 on incidence, 29 on prevalence) were included. Incidence rates varied from 1.6 to 23 and prevalence from 3.8 to 400/100,000. Pooled incidence and prevalence were higher for girls (10.0 [9.4-10.7] and 19.4 [18.3-20.6]/100,000) than boys (5.7 [5.3-6.2] and 11.0 [10.2-11.9]/100,000). Oligoarthritis was the most frequent form (pooled incidence rate 3.7 [3.5-3.9] and prevalence 16.8 [15.9-17.7]/100,000). The direct standardized incidence rate was 8.2 [7.5-9.0] and prevalence 70.2 [62.9-78.1]/100,000. In Europe in 2010, the estimated number of incident cases was 6896 [5481-8578] and 59,175 [44,256-76,983] prevalent cases. Incidence and prevalence varied greatly among published reports of juvenile idiopathic arthritis, which may be explained by methodological issues, classification used, and time. Estimating the number of affected children can be useful, especially with the new treatment possibilities. Copyright © 2013 Société française de rhumatologie. Published by Elsevier SAS. All rights reserved.
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              EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases.

              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.
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                Author and article information

                Contributors
                daniel.clemente@salud.madrid.org
                leticialeonm@gmail.com
                h.e.foster@newcastle.ac.uk
                loreto.carmona@inmusc.eu
                49-30-28460669 , minden@drfz.de
                Journal
                Pediatr Rheumatol Online J
                Pediatr Rheumatol Online J
                Pediatric Rheumatology Online Journal
                BioMed Central (London )
                1546-0096
                9 June 2017
                9 June 2017
                2017
                : 15
                : 49
                Affiliations
                [1 ]ISNI 0000 0004 1767 5442, GRID grid.411107.2, Paediatric Rheumatology Unit, , Hospital Infantil Universitario “Niño Jesús”, ; Madrid, Spain
                [2 ]GRID grid.449750.b, IDISSC, Hospital Clínico San Carlos; Health Sciences, , Universidad Camilo José Cela, ; Madrid, Spain
                [3 ]Musculoskeletal Research Group, Institute Cellular Medicine, Newcastle University, and Great North Children’s Hospital, Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
                [4 ]Instituto de Salud Musculoesquelética, Madrid, Spain
                [5 ]ISNI 0000 0001 2218 4662, GRID grid.6363.0, , Department of Rheumatology and Clinical Immunology, and German Rheumatism Research Centre, Charité University Medicine Berlin, a Leibniz Institute, ; Berlin, Germany
                Author information
                http://orcid.org/0000-0003-2775-0111
                Article
                179
                10.1186/s12969-017-0179-8
                5466791
                28599656
                75c4a878-7008-4a7d-87c5-eadaa7743f12
                © The Author(s). 2017

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 7 March 2017
                : 5 June 2017
                Categories
                Short Report
                Custom metadata
                © The Author(s) 2017

                Pediatrics
                transitional care,rheumatic diseases,adolescents,young adults,chronic disease,survey method
                Pediatrics
                transitional care, rheumatic diseases, adolescents, young adults, chronic disease, survey method

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