Transitioning patients with juvenile idiopathic arthritis to adult care: the Nordic experience.


Journal

Pediatric rheumatology online journal
ISSN: 1546-0096
Titre abrégé: Pediatr Rheumatol Online J
Pays: England
ID NLM: 101248897

Informations de publication

Date de publication:
01 Oct 2022
Historique:
received: 06 05 2022
accepted: 13 09 2022
entrez: 1 10 2022
pubmed: 2 10 2022
medline: 5 10 2022
Statut: epublish

Résumé

With juvenile idiopathic arthritis (JIA), there are several protocols and practices used worldwide for the transition from paediatric to adult care. In this study, we examined the transferral rates and disease activity after transition, as well as the disease- and health-related outcomes. We also introduce the transition practices employed in the Nordic countries. The study population comprised 408 participants with a disease onset from 1997 to 2000 who attended an 18-year follow-up visit in this population-based Nordic JIA cohort study. The patients were retrospectively divided into three subgroups: Patients transferred directly from paediatric care to adult rheumatology care, patients referred there later, and patients never transferred during the 18-year follow-up period. One hundred and sixty-three (40%) JIA patients had been directly transferred to an adult clinic. The cumulative transition rate was 52%, but there were significant differences between the participating centres. Fifty patients had later been referred to an adult clinic. Among the 195 patients who had never been transferred, 39% were found to have disease activity at the study visit. This study highlights the need to reconsider transition practices to avoid our undesirable finding of patients with disease activity in JIA, but no appropriate health care follow-up.

Sections du résumé

BACKGROUND BACKGROUND
With juvenile idiopathic arthritis (JIA), there are several protocols and practices used worldwide for the transition from paediatric to adult care. In this study, we examined the transferral rates and disease activity after transition, as well as the disease- and health-related outcomes. We also introduce the transition practices employed in the Nordic countries.
METHODS METHODS
The study population comprised 408 participants with a disease onset from 1997 to 2000 who attended an 18-year follow-up visit in this population-based Nordic JIA cohort study. The patients were retrospectively divided into three subgroups: Patients transferred directly from paediatric care to adult rheumatology care, patients referred there later, and patients never transferred during the 18-year follow-up period.
RESULTS RESULTS
One hundred and sixty-three (40%) JIA patients had been directly transferred to an adult clinic. The cumulative transition rate was 52%, but there were significant differences between the participating centres. Fifty patients had later been referred to an adult clinic. Among the 195 patients who had never been transferred, 39% were found to have disease activity at the study visit.
CONCLUSION CONCLUSIONS
This study highlights the need to reconsider transition practices to avoid our undesirable finding of patients with disease activity in JIA, but no appropriate health care follow-up.

Identifiants

pubmed: 36182898
doi: 10.1186/s12969-022-00742-2
pii: 10.1186/s12969-022-00742-2
pmc: PMC9526898
doi:

Substances chimiques

Antirheumatic Agents 0

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

84

Informations de copyright

© 2022. The Author(s).

Références

J Rheumatol. 2004 Feb;31(2):390-2
pubmed: 14760812
J Rheumatol. 2003 Oct;30(10):2275-82
pubmed: 14528529
Int J Rheum Dis. 2017 May;20(5):567-575
pubmed: 28524619
J Rheumatol. 2004 Nov;31(11):2290-4
pubmed: 15517647
J Rheumatol. 2013 May;40(5):715-24
pubmed: 23418376
Ann Rheum Dis. 2016 Jan;75(1):190-5
pubmed: 25362042
Arthritis Res Ther. 2019 Jul 8;21(1):168
pubmed: 31287015
Ann Rheum Dis. 2016 Apr;76(4):639-646
pubmed: 27802961
J Adolesc Health. 2008 Apr;42(4):335-43
pubmed: 18346658
Scand J Rheumatol. 2022 Mar 11;:1-5
pubmed: 35272583
Arthritis Rheum. 2011 Sep;63(9):2809-18
pubmed: 21560116
Arthritis Rheum. 1995 Jan;38(1):44-8
pubmed: 7818570
Pediatr Rheumatol Online J. 2010 Jul 08;8:20
pubmed: 20615240
J Adolesc Health. 2015 Jun;56(6):612-8
pubmed: 26003575
Dev Sci. 2010 Nov;13(6):F15-24
pubmed: 20977551
Semin Arthritis Rheum. 2017 Oct;47(2):269-275
pubmed: 28583690
BMC Complement Altern Med. 2014 Apr 04;14:124
pubmed: 24708564
Arthritis Rheum. 1980 Feb;23(2):137-45
pubmed: 7362664
Pediatr Rheumatol Online J. 2018 Aug 3;16(1):50
pubmed: 30075795
Ann N Y Acad Sci. 2008 Mar;1124:111-26
pubmed: 18400927
Rheumatology (Oxford). 2021 Dec 1;60(12):5560-5566
pubmed: 33591311
Curr Rheumatol Rep. 2019 Sep 6;21(10):57
pubmed: 31492991
Rheumatology (Oxford). 2013 Nov;52(11):1999-2003
pubmed: 23893666
Clin Exp Rheumatol. 2006 Nov-Dec;24(6 Suppl 43):S105-10
pubmed: 17083772
Clin Exp Rheumatol. 2018 Nov-Dec;36(6):1086-1094
pubmed: 29652654
Arthritis Care Res (Hoboken). 2020 Apr;72(4):507-516
pubmed: 30762291
Ocul Immunol Inflamm. 2013 Dec;21(6):478-85
pubmed: 23957455
Arthritis Rheum. 2005 Jul;52(7):2092-102
pubmed: 15986372
Neurosci Biobehav Rev. 2010 Apr;34(5):631-48
pubmed: 20026110

Auteurs

Katriina Mikola (K)

New Children's Hospital, Pediatric Research Center, University of Helsinki and Helsinki University Hospital, Stenbackinkatu 9, 00290, Helsinki, Finland. Katriina.Mikola@hus.fi.

Katariina Rebane (K)

New Children's Hospital, Pediatric Research Center, University of Helsinki and Helsinki University Hospital, Stenbackinkatu 9, 00290, Helsinki, Finland.

Ellen Dalen Arnstad (ED)

Department of Pediatrics, Levanger Hospital, Nord-Trøndelag Hospital Trust, Levanger, Norway.
Department of Clinical and Molecular Medicine, NTNU - Norwegian University of Science and Technology, Trondheim, Norway.

Lillemor Berntson (L)

Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.

Anders Fasth (A)

Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Mia Glerup (M)

Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark.

Troels Herlin (T)

Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark.

Hannu Kautiainen (H)

Kuopio University Hospital, Primary Health Care Unit Kuopio, Pohjois-Savo, Finland.
Folkhälsan Research Center, Helsinki, Finland.

Susan Nielsen (S)

Department of Pediatrics, Rigshospitalet Copenhagen University Hospital, Copenhagen, Denmark.

Ellen Nordal (E)

Department of Pediatrics, University Hospital of North Norway and Pediatric Research Group, Tromsø, Norway.
Department of Clinical Medicine, UIT the Arctic University of Norway, Tromsø, Norway.

Suvi Peltoniemi (S)

Helsinki University Central Hospital, HUS Inflammation Center, Rheumatology and University of Helsinki, Helsinki, Finland.

Marite Rygg (M)

Department of Clinical and Molecular Medicine, NTNU - Norwegian University of Science and Technology, Trondheim, Norway.
Department of Pediatrics, St. Olavs University Hospital, Trondheim, Norway.

Veronika Rypdal (V)

Department of Pediatrics, University Hospital of North Norway and Pediatric Research Group, Tromsø, Norway.

Marek Zak (M)

Department of Pediatrics, Rigshospitalet Copenhagen University Hospital, Copenhagen, Denmark.

Kristiina Aalto (K)

New Children's Hospital, Pediatric Research Center, University of Helsinki and Helsinki University Hospital, Stenbackinkatu 9, 00290, Helsinki, Finland.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH