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.
Newcastle University, Institute of Cellular Medicine (Rheumatology), Newcastle, UK.
Helen E
HE
Foster
Children's University hospital Charité, Campus Virchow, SPZ, Berlin, Germany.|Epidemiology Unit, German Rheumatism Research Centre, Berlin, Germany.
Kirsten
K
Minden
Paediatric Rheumatology Unit, Hospital Infantil Universitario "Niño Jesús", Madrid, Spain.
Daniel
D
Clemente
Hospital Cí-nico San Carlos, Instituto de Investigación Sanitaria del Hospital Clínico San Carlos (IDISSC), Madrid, Madrid, Spain.|Health Sciences, Universidad Camilo José Cela, Madrid, Madrid, Spain.
Leticia
L
Leon
University of Manchester, Centre for Musculoskeletal Research, Manchester, Manchester, UK.
Janet E
JE
McDonagh
Immunology and Infectiology, Erasmus MC-Sophia, Rotterdam, The Netherlands.
Sylvia
S
Kamphuis
Karolinska Universitetssjukhuset, Stockholm, Sweden.
Karin
K
Berggren
Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital Rotterdam, Rotterdam, The Netherlands.
Philomine
P
van Pelt
Pediatric Immunology, University Hospital Gasthuisberg, Leuven, Belgium.
Carine
C
Wouters
University of Leeds, School of Healthcare, Leeds, UK.
Jennifer
J
Waite-Jones
University of Sheffield, School of Health and Related Research, Sheffield, Sheffield, UK.
Rachel
R
Tattersall
Paediatric Rheumatology, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, Newcastle upon Tyne, UK.
Ruth
R
Wyllie
London, UK.
Simon R
SR
Stones
Pediatria II, Universita degli Studi di Genova Scuola di Scienze Mediche e Farmaceutiche, Genova, Liguria, Italy.
Alberto
A
Martini
Department of Pediatrics, Semmelweis Egyetem, Budapest, Hungary.
Tamas
T
Constantin
Transitionssprechstunde am Dr. von Haunerschen Kinderspital, Ludwig-Maximilians-Universität München, Munchen, Germany.
Susanne
S
Schalm
Gulhane Military Medical Academy, School of Nursing, Ankara, Turkey, Ankara, Turkey.
Berna
B
Fidanci
Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine, Istanbul, Turkey.
Burak
B
Erer
Gulhane Military Medical Faculty, Pediatric Rheumatology Unit, FMF Arthritis Vasculitis and Orphan Disease Research in Pediatric Rheumatology (FAVOR), Etlik, Ankara 06018, Turkey, Ankara, Turkey.
Erkan
E
Demirkaya
Pediatric Rheumatology, Hacettepe University Medical Faculty, Ankara, Turkey.
Seza
S
Ozen
Instituto de Salud Musculoesquelética, Madrid, Spain.
Loreto
0000-0002-4401-2551
L
Carmona
D000293:Adolescent; D000328:Adult; D002648:Child; D003142:Communication; D004282:Documentation; D006801:Humans; D009140:Musculoskeletal Diseases / Q000628:therapy*; D016134:Organizational Policy; D010348:Patient Care Team; D012216:Rheumatic Diseases / Q000628:therapy*; D013997:Time Factors; D060305:Transition to Adult Care; D055815:Young Adult
Health services research; Juvenile Idiopathic Arthritis; Multidisciplinary team-care; Quality Indicators