Literature DB >> 27802961

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases.

Helen E Foster1, Kirsten Minden2,3, Daniel Clemente4, Leticia Leon5,6, Janet E McDonagh7, Sylvia Kamphuis8, Karin Berggren9, Philomine van Pelt10, Carine Wouters11, Jennifer Waite-Jones12, Rachel Tattersall13, Ruth Wyllie14, Simon R Stones15, Alberto Martini16, Tamas Constantin17, Susanne Schalm18, Berna Fidanci19, Burak Erer20, Erkan Demirkaya21, Seza Ozen22, Loreto Carmona23.   

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. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Entities:  

Keywords:  Health services research; Juvenile Idiopathic Arthritis; Multidisciplinary team-care; Quality Indicators

Mesh:

Year:  2016        PMID: 27802961     DOI: 10.1136/annrheumdis-2016-210112

Source DB:  PubMed          Journal:  Ann Rheum Dis        ISSN: 0003-4967            Impact factor:   19.103


  37 in total

1.  Paediatric rheumatic diseases: Navigating the transition from paediatric to adult care.

Authors:  Erica F Lawson; Elizabeth D Mellins
Journal:  Nat Rev Rheumatol       Date:  2017-02-09       Impact factor: 20.543

2.  Psychological/social factors associated with transfer readiness in young people with juvenile idiopathic arthritis.

Authors:  Philippa Howsley; Lisa Dunkley; Rachel Calvert; Samuel Hawley; Rachel Tattersall; Anne-Marie McMahon; Daniel Hawley
Journal:  Clin Rheumatol       Date:  2022-07-28       Impact factor: 3.650

3.  The 2021 EULAR/American College of Rheumatology Points to Consider for Diagnosis, Management and Monitoring of the Interleukin-1 Mediated Autoinflammatory Diseases: Cryopyrin-Associated Periodic Syndromes, Tumour Necrosis Factor Receptor-Associated Periodic Syndrome, Mevalonate Kinase Deficiency, and Deficiency of the Interleukin-1 Receptor Antagonist.

Authors:  Micol Romano; Z Serap Arici; David Piskin; Sara Alehashemi; Daniel Aletaha; Karyl Barron; Susanne Benseler; Roberta A Berard; Lori Broderick; Fatma Dedeoglu; Michelle Diebold; Karen Durrant; Polly Ferguson; Dirk Foell; Jonathan S Hausmann; Olcay Y Jones; Daniel Kastner; Helen J Lachmann; Ronald M Laxer; Dorelia Rivera; Nicola Ruperto; Anna Simon; Marinka Twilt; Joost Frenkel; Hal M Hoffman; Adriana A de Jesus; Jasmin B Kuemmerle-Deschner; Seza Ozen; Marco Gattorno; Raphaela Goldbach-Mansky; Erkan Demirkaya
Journal:  Arthritis Rheumatol       Date:  2022-05-27       Impact factor: 15.483

Review 4.  [New support services for the care of young patients with rheumatic diseases].

Authors:  S Schalm; M Niewerth; K Minden
Journal:  Z Rheumatol       Date:  2018-10       Impact factor: 1.372

Review 5.  [Transition in pediatric rheumatology-experiences from the pediatric rheumatism center Sankt Augustin].

Authors:  A Klein; F Olbert; S Wintrich; V Lutz-Wiegers; G Horneff
Journal:  Z Rheumatol       Date:  2018-10       Impact factor: 1.372

6.  Acceptable quality of life and low disease activity achievable among transition phase patients with rheumatic disease.

Authors:  Heikki Relas; Silja Kosola
Journal:  Clin Rheumatol       Date:  2018-10-29       Impact factor: 2.980

7.  Are we there yet? An update on transitional care in rheumatology.

Authors:  Janet E McDonagh; Albert Farre
Journal:  Arthritis Res Ther       Date:  2018-01-11       Impact factor: 5.156

8.  Chronic non-bacterial osteitis from the patient perspective: a health services research through data collected from patient conferences.

Authors:  Colen Cooper Gore Silier; Justina Greschik; Susanne Gesell; Veit Grote; Annette F Jansson
Journal:  BMJ Open       Date:  2017-12-26       Impact factor: 2.692

9.  Young People's, Parents', and Professionals' Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study.

Authors:  Jennifer M Waite-Jones; Rabiya Majeed-Ariss; Joanna Smith; Simon R Stones; Vanessa Van Rooyen; Veronica Swallow
Journal:  JMIR Mhealth Uhealth       Date:  2018-01-19       Impact factor: 4.773

10.  Patterns of Healthcare Use and Medication Adherence among Youth with Systemic Lupus Erythematosus during Transfer from Pediatric to Adult Care.

Authors:  Joyce C Chang; Andrea M Knight; Erica F Lawson
Journal:  J Rheumatol       Date:  2020-02-01       Impact factor: 4.666

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