Changes in Modern Care for Juvenile Idiopathic Arthritis: How Much Does This Affect Health-Related Quality of Life?

The last 2 decades have seen more frequent and targeted use of synthetic and biologic (b-) disease-modifying antirheumatic drugs (DMARDs) in the treatment of juvenile idiopathic arthritis (JIA).^1,2 Although the aim of disease-modifying therapies is to reduce inflammation,³ corresponding reductions are expected in pain, fatigue, and functional limitations. These should allow for increased participation in daily activities such as schooling, exercise, and social engagement, and therefore higher overall health-related quality of life (HRQOL).⁴

In this issue of The Journal of Rheumatology, Tsai et al compare changes in HRQOL over the first year following a diagnosis of JIA in young people recruited to 1 of 2 Canadian inception cohorts: Research in Arthritis in Canadian Children Emphasizing Outcomes (ReACCh-Out) from 2005 to 2010 (n = 663) and Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) from 2017 to 2023 (n = 478). These large-scale, multicenter recruitment efforts from across Canada allowed comparison of changes in both treatment practices and HRQOL between the early biologic area and more recent years.⁵

As expected, Tsai et al found that treatment was stepped up earlier and more often in 2017-2023 compared with 2005-2010, with greater recent use of both conventional synthetic DMARDs and bDMARDs within the first year following diagnosis (58% vs 46% and 27% vs 6%, respectively).⁵ Earlier Canadian work in these same cohorts showed a sharp rise in inactive disease within 70 weeks of diagnosis, from 64% in 2005-2010 (ReACCh-Out) to 83% in 2017-2021 (CAPRI), despite similar baseline disease activity.⁶ These were linked to better pain control (−1.62 cm vs −2.07 cm, respectively). Newer treatment strategies therefore appear to achieve greater control of both inflammation and pain.

Children and young people in both cohorts completed the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), a multidimensional HRQOL questionnaire covering 4 domains: gross motor function, fine motor function, psychosocial function, and systemic symptoms.⁷ Overall HRQOL scores improved in the year following diagnosis in both cohorts (−0.92 and −0.97, respectively), demonstrating success in current treatment efforts on the lives of children and young people with JIA. However, it is worth noting that approximately half of children initially recruited to each cohort did not have sufficient HRQOL data for analysis. The missingness mechanism for these data is unknown. However, missing data in observational studies of childhood arthritis are frequently related to remission status.⁸ Although initial JAQQ scores for those included and excluded from analyses were similar, it is possible that parents of children with mild disease or in remission at 1 year may either (1) not have returned for a clinical appointment, and so had no opportunity to receive and complete the JAQQ; or (2) be less likely to complete all 74 questionnaire items where perceived less relevant to their child’s care. As a result, it is possible that the current study⁵ underestimates improvement in HRQOL after an initial JIA diagnosis in both eras.

Tsai et al⁵ reported small progress in improving HRQOL in the recent era (0.15 further improvement in 2017-2022 compared with 2005-2010), which appeared to be driven by relative improvements in gross (coefficient 0.30, 95% CI 0.11-0.48) and fine motor function (coefficient 0.19, 95% CI 0.06-0.33). Importantly, the JAQQ symptom items related to side effects changed little between the eras, suggesting greater DMARD use has corresponded with improved function but has not led to a noticeable increase in the perceived treatment burden at 1 year. Although these are promising results, treatment exposure length varied between participants, and approximately a quarter had been on DMARDs for less than 4 months by the 1-year visit. Therefore, both treatment benefits as well as the influence of adverse events (which may be yet to be experienced) could be undercaptured. Moreover, whereas this study captures a favorable snapshot early in disease, it may underestimate both the benefits and harms that may be attributed to treatment in the longer term.

Tsai et al reported subgroups of children and young people for whom outcomes have changed more substantially between eras.⁵ For those who had at least 5 active joints at diagnosis, all JAQQ domains showed greater improvement in recent years. Therefore, the recent shift to more frequent and targeted DMARD use has particularly benefited those with more severe inflammatory disease. For those children with milder disease, further improvements in HRQOL may not be determined by better control of inflammation.

Although greater improvements were seen in physical function in the 2017-2022 compared with the 2005-2010 cohort, this trend did not apply to psychosocial function. It is possible that the short follow-up window masks longer-term benefits of newer treatment strategies. Mental health and self-esteem trajectories are known to lag behind those of function and pain,^9,10 and so these benefits may be seen with longer follow-up. However, it is also likely that changes in treatment strategies have better affected physical rather than psychosocial outcomes. Discordance between clinical outcomes and patient-reported impact is not an uncommon finding in those with JIA, with frequent reports of mismatches between clinician and patient/parent global ratings.¹¹ A multicenter prospective longitudinal study in the United Kingdom reported the persistence of this trend, with patient-reported well-being and clinical measures commonly diverging, with distinct trajectories over time.¹⁰ One in 4 children experienced improvements in joint activity and physician global scores, and yet maintained poor well-being, chronic pain, and functional limitations.⁹ This pattern persisted in 1 in 8 children following the initiation of methotrexate¹² and 1 in 3 following etanercept therapy.¹³ Therefore, strategies beyond inflammatory disease control may be needed to further improve HRQOL.

Likely candidates beyond inflammation driving HRQOL across the categories of JIA include factors related to underresearched disease mechanisms, underfunded specialty interventions, and the wider social context surrounding each family. The advent of ongoing symptoms such as chronic pain, fatigue, and poor mental health in those with JIA, despite inflammatory disease control, is an area that requires greater investigation into disease mechanisms, clear treatment targets, and effective interventions. Multidisciplinary team and allied healthcare involvement may aid the treatment of the noninflammatory burden of JIA, with inclusion across treatment guidelines.^14-18 However, real-world access to such allied healthcare, including psychology, pain management teams, and physiotherapy, remains poor.¹⁹ In addition, sociocultural factors such as socioeconomic status are known to have a large effect on many areas of life, such as health literacy, access to health care and support services, school disruptions, family stresses, discrimination, and access to social capital.²⁰ All these are unlikely to be influenced by changes in JIA treatment strategies. In UK and North American populations, lower socioeconomic status is independently associated with reduced HRQOL, higher levels of perceived pain, and reduced social and functional participation for those with JIA, even when accounting for disease severity.^21,22 Therefore, although greater success of DMARDs in controlling inflammation is to be celebrated, greater effort is needed to tackle both noninflammatory symptoms and societal inequalities that affect the care of those with JIA.

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