Dtsch Med Wochenschr 2021; 146(18): 1184-1191
DOI: 10.1055/a-1332-9041
Dossier

Rheumatische Erkrankungen – Betreuung am Übergang zum Erwachsenenalter

Rheumatic diseases – Transition from pediatric to adult-oriented care
Kirsten Minden
,
Martina Niewerth
,
Susanne Schalm

Das Jugend- und junge Erwachsenenalter stellt eine besondere Risikophase für Verlauf und Prognose rheumatischer Erkrankungen dar. Etwa die Hälfte der jungen Rheumatiker bricht in dieser lebensprägenden Zeit vorübergehend oder dauerhaft die regelmäßige fachspezifische Versorgung ab [1] [2] [3]. Worauf in der medizinischen Betreuung rheumakranker Jugendlicher und junger Erwachsener zu achten ist, wird in diesem Beitrag dargestellt.

Abstract

Adolescence and young adulthood represent a vulnerable phase of life, especially for young people with a chronic rheumatic disease. On the one hand, the chronic disease can impair the biopsychosocial development of young people. On the other hand, risk behaviour common in adolescence and young adulthood can negatively influence the course and outcome of the rheumatic disease. In this challenging and future health-determining phase, up to half of the young people with chronic rheumatic diseases temporarily or permanently drop out of specialized care and are therefore particularly at risk of adverse outcomes. To ensure continuity of care and the best possible outcomes for those affected, young people need education, support, and guidance. They must be prepared to be appropriately responsible and capable of managing their own health and well-being as adults. The key principles to be considered in the care of adolescents and young adults with rheumatic diseases and what is known so far about transitional care in rheumatology are presented in this paper.



Publication History

Article published online:
14 September 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 
  • Literatur

  • 1 Hazel E, Zhang X, Duffy CM. et al. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J 2010; 8: 2
  • 2 Luque Ramos A, Hoffmann F, Albrecht K. et al. Transition to adult rheumatology care is necessary to maintain DMARD therapy in young people with juvenile idiopathic arthritis. Semin Arthritis Rheum 2017; 47 (02) 269-275
  • 3 Jensen PT, Paul GV, LaCount S. et al. Assessment of transition readiness in adolescents and young adults with chronic health conditions. Pediatr Rheumatol Online J 2017; 15 (01) 70
  • 4 Milatz F, Liedmann I, Niewerth M. et al. Health risk behaviors in adolescents with juvenile idiopathic arthritis in the course of disease: results of the German multicenter inception cohort (ICON). Ann Rheum Dis 2020; 79 (Suppl. 01) 494-495 DOI: 10.1136/annrheumdis-2020-eular.2155.
  • 5 Stroud C, Walker LR, Davis M. et al. Investing in the health and well-being of young adults. J Adolesc Health 2015; 56: 127-129
  • 6 Rapoff MA. Management of adherence and chronic rheumatic disease in children and adolescents. Best Pract Res Clin Rheumatol 2006; 20 (02) 301-314
  • 7 Tiller G, Allen R. Rheumatology and the adolescent patient. Aust Fam Physician 2017; 46 (08) 558-563
  • 8 Hedman A, Breithaupt L, Hübel C. et al. Bidirectional relationship between eating disorders and autoimmune diseases. J Child Psychol Psychiatry 2019; 60 (07) 803-812
  • 9 Fair DC, Rodriguez M, Knight AM. et al. Depression And Anxiety In Patients With Juvenile Idiopathic Arthritis: Current Insights And Impact On Quality Of Life, A Systematic Review. Open Access Rheumatol 2019; 11: 237-252
  • 10 Bechtold S, Simon D. Growth abnormalities in children and adolescents with juvenile idiopathic arthritis. Rheumatol Int 2014; 34 (11) 1483-1488
  • 11 Schenck S, Niewerth M, Sengler C. et al. Prevalence of overweight in children and adolescent with juvenile idiopathic arthritis. Scand J Rheumatol 2015; 44 (04) 288-295
  • 12 Stagi S, Masi L, Capannini S. et al. Cross-sectional and longitudinal evaluation of bone mass in children and young adults with juvenile idiopathic arthritis: the role of bone mass determinants in a large cohort of patients. J Rheumatol 2010; 37: 1935-1943
  • 13 Milatz F, Klotsche J, Niewerth M. et al. Participation in school sports among children and adolescents with juvenile idiopathic arthritis in the German National Paediatric Rheumatologic Database, 2000–2015: results from a prospective observational cohort study. Pediatr Rheumatol Online J 2019; 17 (01) 6
  • 14 Giancane G, Muratore V, Marzetti V. et al. Disease activity and damage in juvenile idiopathic arthritis: methotrexate era versus biologic era. Arthritis Res Ther 2019; 21 (01) 168
  • 15 Schlichtiger J, Haas JP, Barth S. et al. Education and employment in patients with juvenile idiopathic arthritis – a standardized comparison to the German general population. Pediatr Rheumatol Online J 2017; 15 (01) 45
  • 16 Díaz-Mendoza AC, Modesto Caballero C, Navarro-Cendejas J. Analysis of employment rate and social status in young adults with childhood-onset rheumatic disease in Catalonia. Pediatr Rheumatol Online J 2015; 13: 29
  • 17 Drechsel P, Stüdemann K, Niewerth M. et al. Pregnancy outcomes in DMARD-exposed patients with juvenile idiopathic arthritis-results from a JIA biologic registry. Rheumatology (Oxford) 2020; 59 (03) 603-612
  • 18 Bitencourt N, Bermas BL, Makris UE. et al. Time to Completed Visit and Healthcare Utilization among Young Adults Transferring from Pediatric to Adult Rheumatologic Care in a Safety-Net Hospital. Arthritis Care Res (Hoboken) 2020; DOI: 10.1002/acr.24409.
  • 19 Chira P, Ronis T, Ardoin S. et al. Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada. J Rheumatol 2014; 41 (04) 768-779
  • 20 Hersh AO, Pang S, Curran ML. et al. The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center. Pediatr Rheumatol Online J 2009; 7: 13
  • 21 Foster HE, Minden K, Clemente D. et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis 2017; 76: 639-646
  • 22 Ernst G, Pape L. S3 Leitlinie der Gesellschaft für Transitionsmedizin. Transition von der Pädiatrie in die Erwachsenenmedizin, Version 1.1 (22.04.2021). AWMF-Register Nr. 186-001. Im Internet (Stand: 29.07.2021): https://www.awmf.org/uploads/tx_szleitlinien/186-001l_S3_Transition_Paediatrie_Erwachsenenmedizin_2021-04.pdf
  • 23 Clemente D, Leon L, Foster H. et al. Systematic review and critical appraisal of transitional care programmes in rheumatology. Semin Arthritis Rheum 2016; 46: 372-379
  • 24 McDonagh JE, Farre A. Transitional Care in Rheumatology: a Review of the Literature from the Past 5 Years. Curr Rheumatol Rep 2019; 21 (10) 57
  • 25 Gesellschaft für Kinder- und Jugendrheumatologie. Kerndokumentation – Ergebnisse 2018/19. Im Internet (Stand: 29.07.2021): https://www.gkjr.de/forschungsprojekte/kerndokumentation/ergebnisse-2018