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Original article

Vol. 151 No. 4546 (2021)

Current practice of transitional care for adolescents and young adults in Swiss paediatric and adult rheumatology centres

  • Lut Berben
  • Nora Sigg
  • Mary Louise Daly
  • Stefan Bachmann
  • Walter Baer
  • Gérald Berthet
  • Isabel Bolt
  • Diana Dan
  • Susanna Enderlin Steiger
  • Johannes Fröhlich
  • Paul Hasler
  • Michaël Hofer
  • Christian Huemer
  • Daniela Kaiser
  • Natalie Marcoli
  • Seraina Palmer Sarott
  • Yella Rottländer
  • Gernot Schmid
  • Christa Soennichsen
  • Laura Strahm Furler
  • Federica Vanoni
  • Lukas Wildi
  • Thomas Daikeler
  • Andreas Woerner
Cite this as:
Swiss Med Wkly. 2021;151:w30046


BACKGROUND: About half of all children with rheumatic diseases need continuous medical care during adolescence and adulthood. A good transition into adult rheumatology is essential. Guidelines for a structured transition process have therefore been recommended by the European League Against Rheumatism (EULAR) and the Paediatric Rheumatology European Society (PReS). However, implementation of these guidelines requires resources often not available in a busy clinical practice.

AIMS: To assess the current practice of transitional care in Switzerland in relation to EULAR/PReS recommendations and to describe gaps and challenges in following the recommendations.

METHODS: All paediatric Swiss rheumatology centres and their collaborating adult centres offering a transition service to adult care were invited to participate in this survey. The responsible paediatric and adult rheumatologist of each centre was interviewed separately using a structured manual addressing the EULAR/PReS transitional care recommendations.

RESULTS: All 10 paediatric and 9 out of 10 adult rheumatologists agreed to participate. Centres varied in the number of patients in transition, from n = 0 to n = 111. The following EULAR/PReS recommendations were implemented and applied in most centres: continuity in the healthcare team, consultations focused on adolescents and young adults, joint consultations between the paediatric and adult rheumatologist, and access to the EULAR website. Only rarely did a centre have a written transition policy or evaluate their transitional care programme. The vast majority of the interviewees had no specific training in adolescent health. Most centres rated their transitional care performance as very good.

CONCLUSION: Transition in Switzerland is not uniform and consequently the implementation of the EULAR/PReS recommendations is variable in Swiss rheumatology centres. Skills of healthcare professionals, continuity between clinical settings, size of the centres, and hospital focus on the needs of adolescents and young adults may represent key predictors of successful transitional care for patients with chronic rheumatic diseases. Future studies should examine these variables.


  1. Oen K, Malleson PN, Cabral DA, Rosenberg AM, Petty RE, Cheang M. Disease course and outcome of juvenile rheumatoid arthritis in a multicenter cohort. J Rheumatol. 2002 Sep;29(9):1989–99.
  2. Conti F, Pontikaki I, D’Andrea M, Ravelli A, De Benedetti F. Patients with juvenile idiopathic arthritis become adults: the role of transitional care. Clin Exp Rheumatol. 2018 Nov-Dec;36(6):1086–94.
  3. Roethlisberger S, Jeanneret C, Saurenmann T, Cannizzaro E, Bolt I, Sauvain MJ, et al. Pediatric Rheumatology in Switzerland. Paediatrica. 2015;26(2):22.
  4. World Health Organisation. Adolescent Health [cited 2020, July 27].
  5. Clemente D, Leon L, Foster H, Carmona L, Minden K. Transitional care for rheumatic conditions in Europe: current clinical practice and available resources. Pediatr Rheumatol Online J. 2017;15(1):49. doi: PubMed PMID: 28599656; PubMed Central PMCID: PMCPMC5466791.
  6. Hersh A, von Scheven E, Yelin E. Adult outcomes of childhood-onset rheumatic diseases. Nat Rev Rheumatol. 2011;7(5):290-5. doi: PubMed PMID: 21487383; PubMed Central PMCID: PMCPMC3705738.
  7. Ardoin SP. Transitions in Rheumatic Disease: Pediatric to Adult Care. Pediatr Clin North Am. 2018 Aug;65(4):867–83.
  8. Hilderson D, Westhovens R, Wouters C, Van der Elst K, Goossens E, Moons P. Rationale, design and baseline data of a mixed methods study examining the clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: the DON'T RETARD project. BMJ Open. 2013;3(12):e003591. Epub 2013/12/05. doi: PubMed PMID: 24302502; PubMed Central PMCID: PMCPMC3856617.
  9. Son MB, Sergeyenko Y, Guan H, Costenbader KH. Disease activity and transition outcomes in a childhood-onset systemic lupus erythematosus cohort. Lupus. 2016;25(13):1431-9. Epub 2016/03/26. doi: PubMed PMID: 27013665; PubMed Central PMCID: PMCPMC5035166.
  10. Foster HE, Minden K, Clemente D, Leon L, McDonagh JE, Kamphuis S, et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis. 2017 Apr;76(4):639–46.
  11. Varty M, Popejoy LL. A Systematic Review of Transition Readiness in Youth with Chronic Disease. West J Nurs Res. 2020;42(7):554-66. doi: PubMed PMID: 31530231; PubMed Central PMCID: PMCPMC7078024.
  12. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993 Nov;14(7):570–6.
  13. Liang L, Pan Y, Wu D, Pang Y, Xie Y, Fang H. Effects of Multidisciplinary Team-Based Nurse-led Transitional Care on Clinical Outcomes and Quality of Life in Patients With Ankylosing Spondylitis. Asian Nurs Res. 2019 May;13(2):107–14.
  14. Hilderson D, Moons P, Van der Elst K, Luyckx K, Wouters C, Westhovens R. The clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: results of the DON’T RETARD project. Rheumatology (Oxford). 2016 Jan;55(1):133–42.
  15. McDonagh JE, Southwood TR, Shaw KL ; British Society of Paediatric and Adolescent Rheumatology. The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2007 Jan;46(1):161–8.
  16. Walter M, Kamphuis S, van Pelt P, de Vroed A, Hazes JMW. Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases. Pediatr Rheumatol Online J. 2018;16(1):50. Epub 2018/08/05. doi: PubMed PMID: 30075795; PubMed Central PMCID: PMCPMC6091100.
  17. Shaw KL, Southwood TR, McDonagh JE ; British Society of Paediatric and Adolescent Rheumatology. Young people’s satisfaction of transitional care in adolescent rheumatology in the UK. Child Care Health Dev. 2007 Jul;33(4):368–79.
  18. Clemente D, Leon L, Foster H, Minden K, Carmona L. Systematic review and critical appraisal of transitional care programmes in rheumatology. Semin Arthritis Rheum. 2016 Dec;46(3):372–9.
  19. IBM SPSS Statistics for Windows. Version 24.0 [Internet]. Released 2016.
  20. Wright RJ, Howard EJ, Newbery N, Gleeson H. 'Training gap' - the present state of higher specialty training in adolescent and young adult health in medical specialties in the UK. Future Healthc J. 2017;4(2):80-95. Epub 2017/06/01. doi: PubMed PMID: 31098440; PubMed Central PMCID: PMCPMC6502624.
  21. Michaud PA, Jansen D, Schrier L, Vervoort J, Visser A, Dembinski L. An exploratory survey on the state of training in adolescent medicine and health in 36 European countries. Eur J Pediatr. 2019;178(10):1559-65. Epub 2019/08/30. doi: PubMed PMID: 31463767; PubMed Central PMCID: PMCPMC6733827.
  22. Société Française de Pédiatrie. [cited 2020 November 4]. Available from:
  23. European Training in Effective Adolescent Care and Health (EuTEACH). Lausanne, Switzerland [cited 2020 November 4]. Available from:
  24. Colver A, McConachie H, Le Couteur A, Dovey-Pearce G, Mann KD, McDonagh JE, et al. A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions. BMC Med. 2018;16(1):111. Epub 2018/07/24. doi: PubMed PMID: 30032726; PubMed Central PMCID: PMCPMC6055340.
  25. Colver A, Pearse R, Watson RM, Fay M, Rapley T, Mann KD, et al. How well do services for young people with long term conditions deliver features proposed to improve transition? BMC Health Serv Res. 2018;18(1):337. Epub 2018/05/10. doi: PubMed PMID: 29739396; PubMed Central PMCID: PMCPMC5941647.
  26. Ravelli A, Sinigaglia L, Cimaz R, Alessio M, Breda L, Cattalini M, et al.; Italian Paediatric Rheumatology Study Group and the Italian Society of Rheumatology. Transitional care of young people with juvenile idiopathic arthritis in Italy: results of a Delphi consensus survey. Clin Exp Rheumatol. 2019 Nov-Dec;37(6):1084–91.
  27. Suris JC, Akre C. Key elements for, and indicators of, a successful transition: an international Delphi study. J Adolesc Health. 2015 Jun;56(6):612–8.
  28. Fair C, Cuttance J, Sharma N, Maslow G, Wiener L, Betz C, et al. International and Interdisciplinary Identification of Health Care Transition Outcomes. JAMA Pediatr. 2016;170(3):205-11. Epub 2015/12/01. doi: PubMed PMID: 26619178; PubMed Central PMCID: PMCPMC6345570.
  29. McDonagh JE, Farre A. Are we there yet? An update on transitional care in rheumatology. Arthritis Res Ther. 2018;20(1):5. Epub 2018/01/13. doi: PubMed PMID: 29325599; PubMed Central PMCID: PMCPMC5765652.

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