The Elephant in the Rheum: Time to Address Mental Health as a Priority in Pediatric Rheumatology

Mental health, which encompasses psychological and emotional well-being, is increasingly being recognized as an important aspect of overall health in youth with chronic disease. Particularly in this time of the mental health crisis in children due in large part to the coronavirus disease 2019 (COVID-19) pandemic,1 with evidence of adverse effects on managing rheumatologic disease,2 addressing mental health issues has become critical. In the pediatric rheumatology population, mental health problems have been shown to affect quality of life, educational attainment, and disease-related outcomes such as medication adherence, healthcare utilization, and transition.3 Although patients with juvenile idiopathic arthritis (JIA) represent the largest disease group in pediatric rheumatology, there are gaps in our understanding of mental health effects in JIA, and research to optimize mental health for these patients is needed.

In this issue of The Journal of Rheumatology, Li et al present the results of an interesting cross-sectional study of children with JIA aged 12 to 18 years, examining rates of depressive and anxiety symptoms, and their association with demographic and disease measures.4 The sample included 80 Canadian adolescents who presented to a tertiary care pediatric hospital and had JIA diagnoses of varying subtypes for at least 6 months. Based on clinical threshold scores on the self-reported Revised Child Anxiety and Depression Scale (RCADS), the numbers of youth endorsing symptoms consistent with a mental health disorder were described according to 6 subscales (ie, separation anxiety, social phobia, generalized anxiety, panic disorder, obsessive-compulsive disorder, and major depressive disorder). Differences in demographic and disease-related factors (eg, patient-reported disease activity, physician global assessment of disease activity [PGA], widespread pain, joint and enthesitis count) between those with and without clinically elevated mental health symptoms were also explored.

Results indicated a recruitment rate of 98%, and a patient sample consisting of diverse JIA subtypes with the highest proportion (28%) experiencing psoriatic arthritis. Across the total sample, 40% of youth demonstrated evidence of clinically elevated anxiety and/or depressive symptoms. The most common elevations were noted on the major depressive disorder (23.8%), panic disorder (22.5%), social phobia (16.3%), and separation anxiety (13.8%) subscales. Of the 14 different analyses exploring differences in demographic and disease-related variables between the groups with and without clinically significant mental health symptoms, there was the most robust evidence to support the association between the presence of various anxiety subtypes and patient-reported disease activity. Widespread pain and female sex were also related to presence of obsessive-compulsive disorder symptoms and panic symptoms, respectively. Further, a higher enthesitis count was significantly associated with presence of social phobia symptoms. No other significant results were found nor were corrections applied for the multiple analyses conducted.

Like most studies evaluating mental health in patients with JIA, the study was a small, single-center study, which affects both the generalizability and significance of the results. With small sample sizes, JIA subtypes may not be accurately represented, and researchers may be forced to combine subtypes. The current study had an overrepresentation of psoriatic JIA, normally 5% to 8% of all JIA, and an underrepresentation of the most common subtype, oligoarticular JIA. Larger, multicenter studies may allow for a more accurate representation of all JIA subtypes to fully understand if different subtypes are associated with a higher risk for mental health issues. Also, this study was cross-sectional, allowing for evaluation of symptoms at only 1 timepoint, rather than over time. Additionally, the current study did not assess rates of clinical mental health diagnoses, but rather assessed rates of mental health symptoms. Further, although use of the RCADS enabled comparison of t-scores from patients with JIA to a normative sample, there was no recruited control group for comparison of mental health symptom rates to healthy adolescents.

Despite these limitations, this study is an important addition to the growing literature on mental health in JIA and pediatric rheumatology. Although not a large enough study to estimate population-level prevalence, the impressive recruitment rate of 98% provides a representative sample of the local JIA clinic population at the authors’ institution. The symptom prevalence rate of 40% with clinically elevated anxiety and/or depressive symptoms is high. Further, as the study took place in 2019, before the COVID-19 pandemic, it may be an underestimate of current symptom rates, which have increased in general for the adolescent population.1 The rate is in keeping with a previous systematic review of mental health in JIA, which found the prevalence of depression symptoms to range from 7% to 36%, and anxiety symptoms ranging from 7% to 64%.5 The rate is also comparable to those seen in other chronic diseases.6,7 Yet, there is conflicting literature on rates of mental health problems in JIA compared to healthy peers. For example, a recent longitudinal study of 4180 patients with JIA in a Finnish nationwide register found a higher incidence of mood and anxiety disorders compared to controls.8 In contrast, another longitudinal study of a Swedish JIA cohort (N = 640) found that the incidence of depression and anxiety in JIA were not statistically different than in healthy controls.9 It is worth noting, however, that even if rates of mental health problems in JIA are similar to peers on a group level, mounting evidence points to the need to address these problems for affected JIA youth to optimize overall health and outcomes.5,10

The study findings also highlight the importance of identifying and addressing anxiety, particularly in youth with JIA. The study is one of the few to evaluate subcategories of anxiety,11,12 and to our knowledge, the only study to evaluate panic disorder symptoms, which were found to be almost as prevalent (22.5%) as depressive symptoms (23.8%). With social phobia and separation anxiety being the next most frequently elevated symptoms, the percentage of youth with clinical anxiety suggests nearly double the rate of depression in this sample. Depression and anxiety are often comorbid, and anxiety is being increasingly recognized as a frequent morbidity, with potential adverse effects on outcomes for youth with chronic medical conditions.13 Regarding the relationship between anxiety and disease outcomes, Li et al4 found that patients with higher self-reported disease activity scored above the clinical threshold on all anxiety subscales except separation anxiety. Interestingly, most patients in the current study had very low levels of physician-reported disease activity (ie, PGA, joint and enthesitis counts), and almost half were on biologic therapy, likely conveying better disease control. Of the physician-reported measures, only higher enthesitis count was associated with scoring above the clinical threshold, specifically on the social phobia subscale. Although this finding may be subject to type 1 error given the overall low enthesitis count (median was zero) in the small cohort, it is supported by other studies that have shown patients with enthesitis have higher pain, worse function, and worse quality of life.14

The study therefore adds to the mixed evidence in the literature of the relationship between depression/anxiety symptoms and JIA disease metrics,9,14 finding inconsistent associations with disease activity, physical function, and disability. Given the potential for subjectivity even in physician-reported disease measures, inclusion of more specific and objective markers of disease inflammation may be helpful in future studies. For example, Hanns et al evaluated the role of inflammation (ie, interleukin 6, C-reactive protein) in 136 patients with JIA, and whereas depression and anxiety were both associated with physician-reported disease activity and disability, they were not associated with the inflammatory markers.15 This kind of examination was beyond the scope of the current study4 but deserves further exploration in JIA and other pediatric rheumatic diseases. Further, emerging literature suggests that systemic inflammation may potentiate brain inflammation and neuropsychiatric dysfunction,16 which may be relevant to inflammation in JIA. The study by Li et al4 highlights a need for larger longitudinal studies to better elucidate the prevalence and incidence of mental health disorders, associated risk factors and relationship to JIA disease, inflammation, and outcomes. Future studies could leverage existing JIA patient registries and collaborative research partnerships, employing a biopsychosocial approach to examine robust clinical, psychological, social, and biosample data in large and diverse cohorts, representative of the range of JIA subtypes and disease activity levels. Importantly, mental health research in pediatric rheumatology is being guided by a prioritized research agenda published by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health Workgroup,17 aiming to enhance and coordinate collaborative research to advance mental health and overall care.

From a clinical practice perspective, the findings of this study and the accumulating data for pediatric rheumatology patients in general indicate that mental health problems need to be addressed as they not only are prevalent but also convey adverse impact on patient outcomes. Yet, our current practice paradigm is not inclusive of addressing mental health alongside physical health. We are behind general pediatric practice and other pediatric subspecialties, where guidelines exist for identifying and managing depression and anxiety in children and adolescents with chronic conditions like type 1 diabetes18 and cystic fibrosis.19 Further, collaborative efforts are ongoing to enhance mental health supports in these and other pediatric subspecialty settings.20,21 Moreover, the American Board of Pediatrics Mental Health Roadmap Project has developed educational resources for integrating mental health care into pediatric subspecialty practices (https://www.roadmapforemotionalhealth.org). With recognition that the rheumatologist is often the primary medical provider for their patients, mental health screening measures are important tools that can be used to enhance care. Optimistically, mental health screening is also gaining momentum in pediatric rheumatology. One multicenter study showed feasibility and acceptability of mental health screening in rheumatology clinics,22 and developing efforts are focusing on implementation science,23 and creation of mental health guidance statements led by a task force for the CARRA Mental Health Workgroup.

As promising as these efforts are, we are still lacking in the resources needed to address mental health problems, as there is a shortage of pediatric mental health providers, especially those with nuanced understanding of pediatric rheumatic diseases.24 Once mental health concerns are identified, early and effective, accessible and equitable intervention is key. It is therefore crucial for the pediatric rheumatology community to advocate for timely access to mental health services for their patients, and this may be facilitated by both the increasing body of mental health research in the field and the current climate of institutional efforts to address the youth mental health crisis. Importantly, it must also be recognized that mental health intervention can range from brief psychoeducation to more in-depth management, which may include evidence-based psychotherapy and/or psychotropic medications, depending on symptom severity. This is exemplified by a psychosocial preventative health model, based on the work of Kazak et al25 and adapted for pediatric rheumatology,3 in which early identification of psychosocial distress and tiered supports match identified levels of need and risk. Only a small percentage of patients may need a psychologist or psychiatric services, or even urgent intervention. In fact, in the current study,4 Li et al note that none of the participants required specific mental health intervention by the rheumatologist. Therefore, stepped and stratified approaches to care can maximize the use of limited resources by reserving care with a mental health specialist (integrated either within or outside of the medical team) for children with more severe mental health concerns.26 These promising approaches may include training in pediatric mental health care for other health professionals, such as social workers, child life specialists, art/play therapists, rheumatologists, adolescent medicine physicians, and primary care physicians, embedded within the medical team using implementation science methods.27 If such efforts are successful and improve child outcomes, behavioral health care—particularly for those children with mild or moderate mental health symptoms—can presumably be delivered more accessibly in the context of medical care. Additionally, technology may also be leveraged to increase access to care (eg, telemedicine, self-management apps).

Overall, the study by Li et al,4 aligned with the literature in JIA and in other pediatric rheumatological diseases, clearly points to an adverse impact of poor mental health on quality of life and health-related outcomes for affected children and adolescents. Alongside expanding collaborative efforts for mental health research, it is time for the pediatric rheumatology community to commit to addressing mental health as a priority in care.

Footnotes

The source(s) of support in the form of grants or industrial support: NRC is supported by a grant from the National Institutes of Health/National Center for Complementary and Integrative Health (K23 AT009458) to test neural mechanisms of treatment response to a psychological therapy for pediatric chronic pain, and a Childhood Arthritis and Rheumatology Research Alliance (CARRA) Transdisciplinary Research Grant to test the effects of a remotely delivered psychological therapy for childhood-onset lupus. AMK is supported by the Canada Research Chair Tier 2, Canada Institute of Health Research; Mason Miracle Award and Mental Health Research Award, Cure JM Foundation; Centre for Behavioural & Mental Health Outcomes Award, Hospital for Sick Children; Transdisciplinary Research Grant and Large Grant, CARRA; and Novel Research Grant, Lupus Research Alliance.

The authors declare no conflicts of interest relevant to this article.

See Mental health in juvenile arthritis, page 804

Copyright © 2023 by the Journal of Rheumatology

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