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Burden of Childhood-Onset Arthritis Pedi- Atric Rheumatology 2010, 8:20 Moorthy et al. Pediatric Rheumatology 2010, 8:20 http://www.ped-rheum.com/content/8/1/20 REVIEW Open Access BurdenReview of childhood-onset arthritis Lakshmi N Moorthy*1, Margaret GE Peterson2, Afton L Hassett3 and Thomas JA Lehman2,4 Abstract Juvenile arthritis comprises a variety of chronic inflammatory diseases causing erosive arthritis in children, often progressing to disability. These children experience functional impairment due to joint and back pain, heel pain, swelling of joints and morning stiffness, contractures, pain, and anterior uveitis leading to blindness. As children who have juvenile arthritis reach adulthood, they face possible continuing disease activity, medication-associated morbidity, and life-long disability and risk for emotional and social dysfunction. In this article we will review the burden of juvenile arthritis for the patient and society and focus on the following areas: patient disability; visual outcome; other medical complications; physical activity; impact on HRQOL; emotional impact; pain and coping; ambulatory visits, hospitalizations and mortality; economic impact; burden on caregivers; transition issues; educational occupational outcomes, and sexuality. The extent of impact on the various aspects of the patients', families' and society's functioning is clear from the existing literature. Juvenile arthritis imposes a significant burden on different spheres of the patients', caregivers' and family's life. In addition, it imposes a societal burden of significant health care costs and utilization. Juvenile arthritis affects health-related quality of life, physical function and visual outcome of children and impacts functioning in school and home. Effective, well-designed and appropriately tailored interventions are required to improve transitioning to adult care, encourage future vocation/occupation, enhance school function and minimize burden on costs. Introduction JIA (PoJIA RF+) with positive results on testing for Rheu- Juvenile Idiopathic Arthritis (JIA) is a chronic inflamma- matoid Factor (RF); 3) Polyarticular onset JIA (PoJIA RF-) tory disease causing erosive arthritis in children, often with negative results on testing for RF; 4) Systemic arthri- progressing to disability. JIA occurs in children of all tis (SoJIA); 5) Psoriatic arthritis JIA; 6) Enthesitis-related races, with annual incidence ranging from 0.008-0.226 arthritis; and 7) Other arthritis undefined by above men- per 1000 children, and prevalence from 0.07-4.01 per tioned criteria [4]. Each subtype is associated with spe- 1000 children [1]. A 2007 Centers for Disease Control cific complications and disabilities. Early disease (CDC) study estimates that 294,000 U.S. children under recognition and institution of appropriate therapy is criti- age 18 (or 1 in 250 children) have been diagnosed with cal to improve the clinical outcome. arthritis or another rheumatologic condition [2]. The As children who have JIA reach adulthood, they face national direct costs in 1989 are estimated at $285 million possible continuing disease activity, medication-associ- in the US for children with arthritis [3]. ated morbidity, life-long disability and risk for emotional One of the most frequently occurring pediatric rheu- and social dysfunction. Children with JIA with uveitis matic diseases, JIA, impacts bio-psychosocial aspects of experience additional visual problems leading to disabil- patients and families necessitating careful diagnosis and ity. In this article we will review the burden of JIA for the initiation of appropriate treatment. JIA is comprised of patient and society focusing on the following areas: the following seven categories as per the ILAR (Interna- patient disability; visual outcome; other medical compli- tional League of Associations of Rheumatology) classifi- cations; physical activity; impact on health-related quality cation [4]:1) Oligoarticular onset JIA also termed as of life (HRQOL); emotional impact; pain and coping; Pauciarticular onset JIA (PaJIA); 2) Polyarticular onset ambulatory visits, hospitalizations and mortality; eco- nomic impact; burden on caregivers; transition issues; * Correspondence: [email protected] educational occupational outcomes; and sexuality. We 1 Robert Wood Johnson Medical School-UMDNJ, Dept. of Pediatrics Room will discuss the above topics under the three following 1361, 89 French Street, New Brunswick, NJ, USA Full list of author information is available at the end of the article headings: Physical Disability, Impact on HRQOL and © 2010 Moorthy et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Moorthy et al. Pediatric Rheumatology 2010, 8:20 Page 2 of 9 http://www.ped-rheum.com/content/8/1/20 Economic burden. Articles related to the above topics in disability was found in 27.8% of patients and persistently the context of childhood arthritis were selected using moderate disability in 3.5%. Second pattern was the find- MEDLINE search technique. ing of a steady improvement (22.9%) or deterioration JIA comprises a heterogeneous group of diseases with (5.7%) in disability over time. The third pattern was the distinct subtypes and all these subtypes have different finding of a fluctuating course of disability, with deterio- phenotypes, course and prognoses. Although, we have ration and improvement (40.1% of patients). The chief included all the subtypes of JIA, we stress here that we determinants of poor functional ability were younger age need further studies in the following areas in each of the at disease onset and a greater restricted joint count. A subtype. Further, not all the articles have exclusively used wide within-patient and between-patient variability in the ILAR system of classification. We have several studies the longitudinal course of functional disability was found. on children with juvenile rheumatoid arthritis (JRA) cited Children with early disease onset and a greater number of throughout the manuscript. restricted joints had the highest risk of developing long- term physical disability [8]. Physical Disability A Mexican cross-sectional study examined the impact Disability of disability on the quality of life in 32 Mexican adults Several studies have elucidated the extent of disability with polyarticular course JIA (mean age 26 years) and associated with JIA. Solari et al explored the disease out- juvenile ankylosing spondylitis (JAS) (mean age 27 years) comes of a cross-sectional sample of 310 children with [9]. A significant proportion of patients with JIA (65%) JIA for at least 5 years and found that about one-fifth had and JAS (50%) had Global Functional Status (GFS) class moderate to severe disability, 3.6% were in Steinbrocker III/IV. Thirty-two percent of JIA patients had a score class III-IV, and about 10% had major impairment in greater than 1.5 when assessed by the Health Assessment HRQOL [5]. One-third of the patients had damage in at Questionnaire-disability index (HAQ-DI). Ninety-two least one joint or joint group and one-fourth showed percent of the JAS patients had a score greater than 5 extraarticular damage. Thirty-five percent of the 150 when examined by the Bath Ankylosing Spondylitis Func- patients having a wrist radiograph had significant struc- tional Index (BASFI). A higher BASFI score indicates tural damage, while 9% had growth retardation [5]. Since worse functional ability. All patients had lower scores for a considerable proportion of the patients had active dis- all physical and mental subscales of the medical out- ease and attendant disability, impaired function, and comes study 36-item short-form health survey (SF-36) damage, the cumulative burden will impose a significant when compared with Mexican population scores (p < load on health care resources. 0.005). But health status did not differ between the Russo et al studied 47 patients with SOJIA with at least patients with JIA and JAS. EQ-5D, a quality of life scale 2 years of disease and found that 43% patients exhibited showed impairment in all dimensions for JIA and JAS damage (38% with articular and 19% with extraarticular patients. The primary determinant of quality of life damage) [6]. The chief determinants of damage were cer- (QOL) as measured by SF 36 questionnaire was the GFS vical spine arthritis and corticosteroid usage in the first 6 score. These results suggest that functional status signifi- months of the disease course. Further, the damage scores cantly impairs HRQOL in adults with JIA and JAS [9]. correlated with number of joints with limited motion, The above studies from 2007-2008 represent the transi- and functional disability [6]. In another study of 89 JIA tion period to biologic agents and several of these patients, almost two-thirds of patients had articular dam- patients were probably on methotrexate and non-biologic age and one third had extra-articular damage [7]. Growth agents. As biologic agents are gaining popularity, next failure was the most common extra-articular manifesta- decade may present different results such as lower level of tion. Juvenile arthritis damage index (JADI)-A (a measure disability and increased functional capacity. or articular damage) correlated with the following vari- ables: (a) radiological damage; (b) childhood health Visual outcome assessment questionnaire (CHAQ); (c)
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