Adult Outcomes of Patients with Juvenile Idiopathic Arthritis

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Abstract

Background: Knowledge of the long-term outcomes of patients with juvenile idiopathic arthritis (JIA) has evolved during the past decade. Recent studies, using standardized classification criteria, new and reliable outcome measures and improved methods of statistical analyses, show that outcomes are still less than ideal. Approximately half of all young adults with JIA have ongoing active disease and over one third experience detectable degrees of disability and organ damage. These patients also show a distinctive pattern of growth disturbances. Most patients with general growth failure have systemic or polyarticular disease: significant short stature (final height standard deviation score <–2) has been noted in 41% of patients with systemic JIA and in 11% of patients with polyarticular JIA. In contrast, localized growth disturbances can be seen in patients with oligoarthritis. Conclusions: Despite its name, JIA can be a lifelong disorder. With early and more widespread use of biological and other innovative therapies, however, outcomes for patients with JIA should improve further.

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Long-term follow-up of 246 adults with juvenile idiopathic arthritis: functional outcome.

J Packham, Deborah A. Hall (2002)

To examine the clinical and functional outcome of adults with juvenile idiopathic arthritis (JIA) using the recent World Health Organization/International League Against Rheumatism (ILAR) classification. Two hundred and fifty-nine adults with long-standing JIA (average disease duration 28.3 yr) were eligible for the study; 246 (95%) attended for an interview, clinical examination and notes review and 231 (89.2%) returned a comprehensive functional and psychosocial self-assessment questionnaire. Of all patients, 43.3% had active arthritis clinically and 54.4% on laboratory measures (C-reactive protein). Clinical inflammation was less common in systemic-onset JIA. The percentage of all patients with severe disability (Health Assessment Questionnaire score >1.5) was 42.9. Uveitis occurred frequently in the oligoarticular-onset and enthesitis-related subsets. Over 30% of the extended oligoarticular group with uveitis developed glaucoma compared with none of the enthesitis group. Adults with JIA often have significant levels of disability, often related to continuing active disease over prolonged periods. There is a clear need for good transition from paediatric to high-quality adult rheumatology care.

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Long-term outcome in patients with juvenile idiopathic arthritis.

Kirsten Minden, Martina Niewerth, Joachim Listing … (2002)

To describe the long-term outcome of juvenile idiopathic arthritis (JIA). All patients with JIA referred to a pediatric rheumatology center between 1978 and 1988 were identified and invited to undergo an assessment. Patients with JIA from a population-based cohort from East Berlin were included. The outcome assessment considered changes in body function and structure (e.g., mortality, joint abnormalities, disease activity), activities at the individual level (Health Assessment Questionnaire), and participation in society (e.g., mobility, educational and vocational background). Of 260 eligible patients, 215 (83%) were evaluated. Subtypes of JIA at disease onset included oligoarthritis (40%), polyarthritis (14%), systemic arthritis (14%), psoriatic arthritis (1%), enthesitis-related arthritis (15%), and other arthritis (16%). Followup was conducted after a median of 16.5 years. No deaths occurred in this cohort. At followup, approximately half of the patients had active disease and/or changes in body structures to a variable extent. Approximately one-third of patients rated themselves as being functionally limited. Patients demonstrated good social integration: few mobility problems were reported, and the educational achievements of patients were higher and their rate of unemployment was lower compared with the age-matched population. No significant differences in outcome were found between the population-based and the referral-based cohorts. Even though approximately half of the JIA patients had more or less distinctive changes in body function and/or structure after a disease duration of >15 years, fewer than 10% were severely disabled or handicapped. Because JIA often persists into adulthood, long-term followup and care are necessary.

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Outcome in adults with juvenile idiopathic arthritis: a quality of life study.

Teresa A. Myers, Tom P J Dunkley, Robert I. Griffiths … (2003)

To evaluate quality of life (QOL) in adults with juvenile idiopathic arthritis (JIA), using validated measures of functional disability and generic health status, and to quantify their educational attainment and employment status. The adult rheumatology departmental database was used to identify patients. Functional disability and generic health status/QOL were assessed by the Health Assessment Questionnaire (HAQ) and the Short Form 36-item health profile (SF-36), respectively. Educational achievement and employment status were assessed by questionnaire. Complete data were available for 82 of the 101 patients identified. The median age of patients was 30 years, and the median disease duration was 21 years. No deaths were recorded. All subtypes of JIA were represented. Thirty-nine percent of patients had active disease (based on the physician global assessment scale score). The median HAQ score was 1.125 (range 0-3). SF-36 scores for bodily pain, general health, physical functioning, vitality, emotion, and social isolation were significantly worse in patients compared with controls, and this trend increased with increasing age of the patients and disease duration. The SF-36 mental summation scores of patients were low compared with those of controls, for all subtypes of JIA, and this finding was independent of the degree of functional disability (by HAQ and SF-36 physical summation scores). The educational attainment of patients was comparable to that of local controls, but unemployment rates for patients were 3-fold higher than those for controls. This is the largest study in which the SF-36 was used to assess generic health status and QOL in adults with JIA. Many patients had active disease in adulthood, and although the physical outcome of adults with JIA is relatively good, a profound effect on generic health status and QOL was demonstrated for all types of JIA. Furthermore, despite excellent educational attainment, there was a high rate of unemployment among patients.

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Author and article information

Journal

Journal ID (publisher-id): HRE

Journal ID (nlm-ta): Horm Res Paediatr

Journal ID (doi): 10.1159/issn.1663-2818

Title: Hormone Research in Paediatrics

Publisher: S. Karger AG

ISBN: 978-3-8055-9292-5

ISBN: 978-3-8055-9293-2

ISSN (Print): 1663-2818

ISSN (Electronic): 1663-2826

Publication date Subscription-year: 2009

Publication date (Print): November 2009

Publication date (Electronic): 27 November 2009

Volume: 72

Issue: Suppl 1

Pages: 20-25

Affiliations

Children’s University Hospital Charité Berlin and Epidemiology Unit, German Rheumatism Research Centre, Berlin, Germany

Article

Publisher ID: 229759 Other ID: Horm Res 2009;72(suppl 1):20–25

DOI: 10.1159/000229759

PubMed ID: 19940491

SO-VID: fed4011e-c838-405a-8fd8-1cdd6680735d

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Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

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Adult Outcomes of Patients with Juvenile Idiopathic Arthritis

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Karger: Endocrinology

Most cited references 10

Long-term follow-up of 246 adults with juvenile idiopathic arthritis: functional outcome.

Long-term outcome in patients with juvenile idiopathic arthritis.

Outcome in adults with juvenile idiopathic arthritis: a quality of life study.

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Cited by 32

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