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EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases
  1. Helen E Foster1,
  2. Kirsten Minden2,3,
  3. Daniel Clemente4,
  4. Leticia Leon5,6,
  5. Janet E McDonagh7,
  6. Sylvia Kamphuis8,
  7. Karin Berggren9,
  8. Philomine van Pelt10,
  9. Carine Wouters11,
  10. Jennifer Waite-Jones12,
  11. Rachel Tattersall13,
  12. Ruth Wyllie14,
  13. Simon R Stones15,
  14. Alberto Martini16,
  15. Tamas Constantin17,
  16. Susanne Schalm18,
  17. Berna Fidanci19,
  18. Burak Erer20,
  19. Erkan Dermikaya21,
  20. Seza Ozen22,
  21. Loreto Carmona23
  1. 1Newcastle University, Institute of Cellular Medicine (Rheumatology), Newcastle, UK
  2. 2Children's University hospital Charité, Campus Virchow, SPZ, Berlin, Germany
  3. 3Epidemiology Unit, German Rheumatism Research Centre, Berlin, Germany
  4. 4Paediatric Rheumatology Unit, Hospital Infantil Universitario “Niño Jesús”, Madrid, Spain
  5. 5Hospital Cí­nico San Carlos, Instituto de Investigación Sanitaria del Hospital Clínico San Carlos (IDISSC), Madrid, Madrid, Spain
  6. 6Health Sciences, Universidad Camilo José Cela, Madrid, Madrid, Spain
  7. 7University of Manchester, Centre for Musculoskeletal Research, Manchester, Manchester, UK
  8. 8Immunology and Infectiology, Erasmus MC—Sophia, Rotterdam, The Netherlands
  9. 9Karolinska Universitetssjukhuset, Stockholm, Sweden
  10. 10Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital Rotterdam, Rotterdam, The Netherlands
  11. 11Pediatric Immunology, University Hospital Gasthuisberg, Leuven, Belgium
  12. 12University of Leeds, School of Healthcare, Leeds, UK
  13. 13University of Sheffield, School of Health and Related Research, Sheffield, Sheffield, UK
  14. 14Paediatric Rheumatology, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, Newcastle upon Tyne, UK
  15. 15London, UK
  16. 16Pediatria II, Universita degli Studi di Genova Scuola di Scienze Mediche e Farmaceutiche, Genova, Liguria, Italy
  17. 17Department of Pediatrics, Semmelweis Egyetem, Budapest, Hungary
  18. 18Transitionssprechstunde am Dr. von Haunerschen Kinderspital, Ludwig-Maximilians-Universität München, Munchen, Germany
  19. 19Gulhane Military Medical Academy, School of Nursing, Ankara, Turkey, Ankara, Turkey
  20. 20Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine, Istanbul, Turkey
  21. 21Gulhane Military Medical Faculty, Pediatric Rheumatology Unit, FMF Arthritis Vasculitis and Orphan Disease Research in Pediatric Rheumatology (FAVOR), Etlik, Ankara 06018, Turkey, Ankara, Turkey
  22. 22Pediatric Rheumatology, Hacettepe University Medical Faculty, Ankara, Turkey
  23. 23Instituto de Salud Musculoesquelética, Madrid, Spain
  1. Correspondence to Dr Leticia Leon, Instituto de Investigación Sanitaria del Hospital Clínico San Carlos (IDISSC), Hospital Clínico San Carlos, Martin Lagos s/n, Madrid 28040, Spain; lleon.hcsc{at}salud.madrid.org

Abstract

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.

  • Juvenile Idiopathic Arthritis
  • Health services research
  • Multidisciplinary team-care
  • Quality Indicators
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Footnotes

  • Handling editor Tore K Kvien

  • HEF and KM contributed equally.

  • Contributors HeEF, KM, DC, LL, JEMD, LC: data abstraction and manuscript preparation; SK, KB, PvP, CW, JW-J, RT, RW, SRS, AM, TC, SS, BF, BE, ED, SO: data abstraction and multidisciplinary panel.

  • Funding This study was supported by a European League Against Rheumatism grant. The panel is very grateful for the administrative and logistical support from Patrizia Jud.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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