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 Table of Contents  
Year : 2021  |  Volume : 16  |  Issue : 3  |  Page : 304-310

Anxiety and depression in childhood rheumatologic conditions: A topical review

1 Department of Family Medicine, College of Human Medicine, Michigan State University, Grand Rapids, Michigan, USA
2 Department of Pediatrics, Division of Pediatric Rheumatology, Duke University Medical Center, Durham, NC, USA
3 Division of Rheumatology, The Hospital for Sick Children, Toronto, Canada
4 Department of Pediatrics, Division of Pediatric Rheumatology, Duke University Medical Center, Durham, NC; Departments of Pediatrics and Medical Social Sciences, Northwestern University Feinberg School of Medicine; Division of Pediatric Rheumatology, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, USA

Date of Submission05-Jan-2020
Date of Acceptance07-Jan-2020
Date of Web Publication21-Sep-2021

Correspondence Address:
Dr. Natoshia R Cunningham
Department of Family Medicine, College of Human Medicine, Michigan State University, 15 Michigan Street NE, Grand Rapids, Michigan 49503
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/injr.injr_127_20

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This topical review summarizes recent literature on mental health symptoms experienced by children diagnosed with rheumatologic conditions including childhood-onset systemic lupus erythematosus (cSLE), juvenile idiopathic arthritis (JIA), and juvenile dermatomyositis (JDM). Studies, while limited, generally indicate that anxiety and depressive symptoms may be more common among children diagnosed with rheumatologic conditions than non-chronically ill children. Although the rates of clinically significant symptoms are not consistently reported across studies, overall anxiety and depressive symptom rates in cSLE vary between 34%–37% and 6.7%–59%, respectively. A recent systematic review of JIA suggests between 7% and 64% of participants experienced elevated anxiety, and between 7% and 36% of participants reported clinically significant depressive symptoms. Approximately 40% of youth with JDM may experience general psychological distress, but more research is needed. In the available literature, there is mixed support for higher rates of anxiety in JIA as compared to cSLE, and higher rates of depressive symptoms in cSLE as compared to JIA, whereas mental health functioning in JDM is less well understood. Mental health functioning in youth with rheumatologic conditions may be related to increased disease-related impairment. Using consistent mental health screening measures with clinically validated cutoffs would enhance insight into the frequency and impact of anxiety and depressive symptoms experienced. Knowledge would also be enhanced by conducting studies with ethnically representative samples to identify potential disparities in care. An improved understanding of mental health functioning in pediatric patients presenting for rheumatologic care may inform the development and testing of tailored and effective treatments.

Keywords: Anxiety, childhood-onset systemic lupus erythematosus, depression, juvenile dermatomyositis, juvenile idiopathic arthritis, mental health

How to cite this article:
Reid MR, Fabricius J, Danguecan A, Ardalan K, Knight A, Cunningham NR. Anxiety and depression in childhood rheumatologic conditions: A topical review. Indian J Rheumatol 2021;16:304-10

How to cite this URL:
Reid MR, Fabricius J, Danguecan A, Ardalan K, Knight A, Cunningham NR. Anxiety and depression in childhood rheumatologic conditions: A topical review. Indian J Rheumatol [serial online] 2021 [cited 2021 Dec 6];16:304-10. Available from:

  Introduction Top

Pediatric rheumatologic conditions are chronic, autoimmune diseases requiring systemic immunosuppression and nonpharmacologic treatments to manage both physical and psychosocial symptoms. Among the most common pediatric rheumatologic conditions are childhood-onset systemic lupus erythematosus (cSLE), juvenile idiopathic arthritis (JIA), and juvenile dermatomyositis (JDM), which are the focus of this current review. In the limited research thus far, mental health problems may be more common across these conditions than among healthy individuals and have been shown to have adverse impacts on functioning. The goal of this topical review was to conduct a literature review on mental health impacts of cSLE, JIA, and JDM, compare across conditions when possible, and identify knowledge gaps.

  Methodology Top

For cSLE and JIA, we searched English language original research manuscripts and systematic reviews published within the last 5 years, between January 2015 and April 2020 [Table 1]. Since there were comparatively fewer studies examining mental health in JDM, studies from 2009 onward were included.
Table 1: Anxiety and Depressive Symptoms Rates in Childhood Rheumatologic Conditions*

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We looked for mental health terms combined with terms for cSLE, JIA or JDM. Mental health terms included: “Mental health” OR “Anxi OR Depress.” Rheumatologic disease terms included “childhood-onset lupus” OR “juvenile idiopathic arthritis” OR “juvenile dermatomyositis.” We searched PubMed/Medline (results revealed 1253 abstracts) and cross-checked the search via Google Scholar, which yielded a similar number studies. Studies that focused on pediatric literature were included, and, in the case of mixed pediatric/adult samples, information pertaining to youth were obtained. Research articles that focused solely on adults were generally excluded, except in cases where there were too few pediatric studies available (e.g., JDM). Our abstract-level database search yielded 15 appropriate articles. We also queried co-authors who are experts in the areas of mental health in pediatric rheumatologic conditions broadly (AK, AD, NRC) and in JDM specifically (KA) to identify three additional original research articles. We included a total of 18 articles.

The racial/ethnic group categories in the original research articles were used to describe the extent of diversity in these samples and therefore vary in the manuscript. We have taken this approach since race/ethnicity is often self-reported using categories provided in each study, which may differ across studies.

  Results Top

Childhood-onset systemic lupus erythematosus

A systematic review revealed anxiety (34%–37%) and depressive symptoms (6.7%–59%) were common.[1] A recent study suggested the most common psychosocial problems in youth with cSLE include fatigue (65%), pain (40%), anxiety (37%), and depressive symptoms (30%).[2] Higher levels of fatigue, pain, and anxiety were also related to poorer health-related quality of life (HR-QoL), which is similar to findings that anxiety and peer victimization are predictive of poor QoL in cSLE.[3] Patients categorized by high levels of fatigue and depressive symptoms were more likely to have a poorer HR-QoL after 6 months.[4] There is some evidence of a positive association between depressive symptoms and medication-non-adherence in cSLE.[5] Further, the presence of an anxiety disorder is associated with abnormal MRI findings, the most common of which was white matter hyperintensities.[6]

In terms of factors that impact mental health care for youth with cSLE, belonging to a minoritized racial group was found to be a risk factor for depression in cSLE, and minoritized youth are less likely to be diagnosed and/or treated for mental health problems as compared to racially minoritized youth who are less likely to be treated for mental health.[7],[8] Individuals diagnosed with cSLE versus adult-onset SLE are at greater risk for developing depression over the long term. Caregiver uncertainty about their child's illness also affects child mental health.[9]

Even though pediatric rheumatologists recognize that mental health problems are common in youth with cSLE and most believe mental health screening should be standard of care, the vast majority (~98%) do not routinely conduct such screenings.[10] Importantly, youth with cSLE and their parents identified rheumatologists as their primary care physicians and reported mental health care in rheumatology to be preferred.[11] A tailored psychological intervention to address mental health concerns for youth with cSLE has been developed[12] and a randomized clinical trial is currently underway.

Juvenile idiopathic arthritis

Results from a recent systematic review[13] found that children with JIA experience anxiety (7%–64%) and depressive symptoms (7%–36%) at similar rates to children with other chronic health conditions,[14] but at greater rates than healthy youth,[13],[14] and these symptoms are related to poorer HR-QoL. Both internalizing and externalizing symptoms may be more common in youth with JIA compared to healthy youth.[15],[16] More recent research has found higher rates of depression (>70%) in a sample of youth with JIA presenting to a tertiary care hospital.[17] In addition, increased anxiety related to pain[18] and depressive symptoms[19] may be positively associated with pain interference. Another study found that methotrexate-induced nausea was associated with greater anxiety in JIA, particularly for females.[20] However, it is unknown how mental health symptoms directly impact disease activity,[13] though there is emerging evidence that depression may be related to disease severity[17] and is generally correlated with clinical disease measures.[19] In 2020, a “CAREGIVERS” questionnaire was developed to measure caregiver and clinician perspectives on the impact of JIA, including the psychosocial impact, potentially enabling improvement in the assessment and subsequent quality of care for youth and families.[21] An online self-management program using cognitive behavioral strategies may be beneficial[22] in improving emotional and pain-related outcomes.

Juvenile dermatomyositis

In comparison to SLE and JIA, research on mental health conditions in JDM is more limited. In one study, >40% of patients with JDM reported sufficient psychologic distress to warrant referral to a mental health specialist.[23] However, a Norwegian study of adults with juvenile-onset dermatomyositis found no differences in mental health functioning compared to matched healthy controls.[24] Over 40% of adult dermatomyositis patients met the criteria for depression or anxiety, with a third of those patients receiving no mental health care.[25] Patients with JDM had significantly decreased psychosocial functioning scores compared to healthy children, even among those who had responded well to immunosuppressive treatment.[26] Similarly, in another study of 490 patients, 12.8% of patients with JDM had decreased HR-QoL in psychosocial domains, with 5% showing major impairment.[27] JDM is often associated with pain, fatigue, and disrupted sleep, which can adversely impact psychosocial function.[28] In a focus group study with parents of children and young adults with JDM, mental health and access to mental health care were major concerns.[29] The diagnosis of JDM has been shown to increase strain on family relationships and worry amongst parents,[30] and lead to uncertainty, feeling different, and doubt about future for children with JDM.[31]

  Discussion Top

Although research on mental health care in rheumatologic disease is limited, this review nevertheless finds anxiety and depression are prevalent, yet remain infrequently assessed and undertreated. Potential ways to overcome barriers to mental health treatment include training, standardized mental health screening and treatment, as well as multidisciplinary care within the rheumatology setting that includes access to a mental health provider, particularly given that families perceive pediatric rheumatologists as their preferred source for primary care and mental health care.[10],[11] Moreover, the rheumatology clinic often serves as the patient's medical home. As such, rheumatologists have the unique opportunity to enhance patient care by screening and referring to the treatment of mental health concerns.

Based on current findings, the variability of screening tools may limit the ability to pinpoint the prevalence and course of anxiety and depression. Therefore, it is important to use consistent, psychometrically sound screening tools with clinical cutoffs so comparisons across and within studies can yield insight into illness prevalence, course, and impact. The American Academy of Pediatrics offers a list of validated tools, including those with clinical cutoffs that are freely available, Many of these tools have also been used in pediatric rheumatology studies [Table 2].
Table 2: Mental Health Screening Tools Used in Pediatric Rheumatology Settings

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Mental health burden and its relationship to rheumatologic conditions, and the impact of mental health on patient outcomes, were among the most important research priorities identified by the multidisciplinary team and patient/caregiver members of the Childhood Arthritis and Rheumatology Research Alliance Mental Health Workgroup.[32] In addition, a recent survey among interdisciplinary cSLE clinicians reported mental health as a middle-priority research topic compared to other illness domains.[33] Despite limited evidence of the direct association between mental health and disease severity, there is clearer evidence of a relationship between anxiety and depressive symptoms and factors pertinent to treatment, such as medication adherence,[5] and pain experience.[18]

At present, most research on mental health functioning in youth with rheumatologic conditions is cross-sectional; therefore, additional longitudinal studies are needed. Moreover, rigorous controlled trials that assess feasibility, acceptability, and that employ a mixed methods approach to qualitatively capture patient and caregiver perspectives would enhance future research and insights. Further, additional primary mental health investigations in the field of JDM would enhance clinician's responses to the mental health needs of youth patients.

Our knowledge of mental health within specific disease groups would also be enhanced by conducting studies with racially and ethnically representative samples to identify disparities in care, and opportunities to achieve health equity for children with rheumatologic conditions. At present, some studies did not report racial/ethnic groups at all, limiting the capacity for sub-analysis. Further investigations that report racial/ethnic groups will allow us to identify differences in mental health care and overall health outcomes among these groups, in addition to enhancing understanding of socioeconomic and environmental circumstances. Race/ethnicity are not biological categories, they are only social constructs; however, racism and discrimination are real experiences with a significant influence on health outcomes, leading to health disparities. Therefore, data analysis must be conducted to account for the influence of race/ethnicity (as proxies for racism/discrimination) as well as other factors (e.g., socioeconomic status and geography) that may relate to mental health outcomes.[34] We know that disparities exist, and by working to further identify these disparities, we can work toward eliminating them. For example, capturing such information may bolster new treatment techniques and may increase clinician knowledge regarding how patients and caregivers may be optimally supported. In summary, investigating anxiety and depression in youth with rheumatologic conditions is important because these are common problems posing threats to recovery and treatment adherence. Enhanced understanding of mental health functioning in youth with rheumatologic conditions may offer clinically meaningful insights into disease management.

  Summary Top

Our analysis of recent literature suggests that depression and anxiety symptom prevalence rates across pediatric rheumatologic conditions vary, with mixed support that anxiety may be more pronounced in JIA as compared to cSLE, whereas depressive symptoms may be more prominent in cSLE versus JIA.[1],[13] However, this might be attributed to the small number of primary investigations on mental health, and the use of small and potentially unrepresentative samples. Mental health in JDM, in particular, is not well understood and deserves further study. The variation in self-report scales used is an additional challenge that has been previously documented in rheumatologic literature.[35] Consistent use of measures with clinically validated cutoffs would improve understanding of patient mental health. In addition, the presence of mental health conditions may impact disease severity or treatment adherence across conditions. More research is needed to understand the prevalence of mental health problems, their relationship with disease outcomes, disparities in care as related to race/ethnicity, and devising optimal mental health treatments in patients with rheumatologic conditions.

Financial support and sponsorship

The senior/corresponding author (NRC) is currently funded by a Transdisciplinary Research Grant Award from the Childhood Arthritis and Rheumatology Research Alliance-Arthritis Foundation (CARRA-AF) and a NIH K23 Award (K23 AT009458).

Conflicts of interest

There are no conflicts of interest.

  References Top

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