Examining Gaps in Mental Health Care Among Youth With Juvenile Rheumatic Disease

Abstract Art
Abstract Art
There is an unmet need for mental health interventions that address illness-related issues affecting youth with rheumatologic conditions.

Despite widespread agreement among rheumatologists and behavioral health providers on the importance of screening children with juvenile rheumatic disease for mental health issues, few pediatric rheumatology centers routinely screen patients for depression or anxiety.1 Andrea Knight, MD, assistant professor of pediatrics at the University of Pennsylvania Perelman School of Medicine, and other investigators with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) recently surveyed social workers and psychologists affiliated with CARRA pediatric rheumatology centers about their views and practices regarding patients’ mental health care. In an interview with Rheumatology Advisor, Dr Knight explained that the research team’s goal was to “get insight from behavioral health providers to better understand the needs of patients and to guide development of interventions.”

Dr Knight has co-authored several studies concerning the psychological effects of rheumatic conditions such as systemic lupus erythematous (SLE) on juveniles and young adults. “Our previous studies found a high prevalence of depression and anxiety in young patients with rheumatologic disease and an unmet need for better mental health care for these patients, as perceived by pediatric rheumatologists.” For example, in a single-institution study that included 50 children and young adults (mean age, 15.6 years) with SLE or mixed connective tissue disease, Dr Knight and colleagues identified symptoms of depression and anxiety in 20% and 22% of patients, respectively, and suicidal ideation in 14% of patients.2

Juvenile idiopathic arthritis (JIA) is the most common juvenile rheumatic disease3 and, like SLE, appears to increase risk for depression and anxiety. Canadian researchers screened 50 children age 6 to 16 years who had a chronic physical condition for a broad range of mental disorders at diagnosis and 6 months after diagnosis.4Screening in the cohort with juvenile idiopathic arthritis (n=11) showed that 36% of patients had major depressive disorder and 18% had generalized anxiety at baseline. The prevalence of each disorder at 6 months was 22%.4Other studies of patients with juvenile rheumatic disease have reported rates of depression and anxiety as high as 65% and suicidal ideation rates of up to 34%.5 Cumulatively, the evidence suggests that children and adolescents with juvenile rheumatic disease have a greater risk for mental illness than their healthy peers5 and that the elevated risk persists into adulthood.6

To obtain a comprehensive understanding of attitudes and current practices concerning mental health care for pediatric patients with juvenile rheumatic disease, Dr Knight and the CARRA investigators conducted 2 surveys of personnel at CARRA centers in the United States and Canada. The first survey, which was completed by 119 pediatric rheumatologists in 2015, was conducted online and included 24 questions.7 The second survey included 50 items and was administered primarily by telephone in 2016 to 34 social workers and 8 psychologists.1 The authors compared responses between the 2 clinician groups when feasible.

Most respondents in both survey groups worked at university-based pediatric rheumatology clinics in urban areas that employed a median of 6 to 7 rheumatologists.1 Using responses from rheumatologists regarding accessibility of behavioral health support at their respective clinics, Dr Knight and associates further stratified outcomes according to providers who received high vs low level of behavioral health support (n=77 vs 38).

Both the behavioral health provider group and the rheumatologist group expressed a similar degree of support for routine depression screening (90% vs 85%).1 Rheumatologists affiliated with centers that offered a high level of behavioral health support were significantly more likely than those whose centers offered a low level of support to favor routine depression screening (90% vs 71%; P <.05).1 Rheumatologists were significantly less likely than behavioral health providers to support routine screening for anxiety (90% vs 65%, P <.01).

Approximately three-quarters of respondents in each survey group indicated that the rheumatology clinic was the best setting to screen patients with juvenile rheumatic disease for depression and anxiety.1 Nevertheless, CARRA investigators found only 49 of the 100 CARRA centers contacted employed a social worker or psychologist and only 1 (2%) behavioral health specialist surveyed worked in a clinic that routinely screened patients. Twelve (29%) said their clinic did not screen patients, 11 (26%) were unsure about their clinic’s practices, and 19 (45%) said their clinic performed some screening.1 Of the rheumatologists surveyed, 98% said they “informally” screened for depression or anxiety. However, only 55% did so routinely and only 2% used a standardized instrument; 43% said they screened on a case-by-case basis.7

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When asked about the disparity between rheumatologists’ support for mental health screening of their patients and current screening practices, Dr Knight said, “I think rheumatologists see the emotional challenges faced by these young patients and their families and know that we could do better at proactively identifying those who are struggling. They support the idea of screening, but making it happen requires resources that are not yet in place for many practices.”

The most common barriers to routine screening cited by the rheumatologists were limited staff resources for screening and follow-up, limited encounter time, limited availability of mental health providers, and lack of institutional support.7 The behavioral health providers identified similar barriers and also identified lack of screening policies and lack of social worker involvement in the screening process.1

Nearly all behavioral health providers surveyed (93%) felt that patients should also be screened for their ability to manage illness-related distress.1 Some data have associated children’s negative attitude toward their illness with an increased risk for depressive symptoms.8 Conversely, mental health disorders can affect outcomes in patients with juvenile rheumatic disease negatively, including treatment adherence, physical and social function, quality of life, sleep, and pain.1,3,5

“Behavioral health providers see these young patients facing mental health issues that are related to their disease and see that they are not getting sufficient resources to address these issues,” Dr Knight said. Only 64% of behavioral health providers and 55% of rheumatologists surveyed felt that their clinic adequately connected youth with mental health symptoms to treatment.1 Only one-third of rheumatologists at clinics with a low level of behavioral support said referral to treatment was adequate. Most behavioral health providers said symptomatic patients were referred to an outside specialist, but fewer than half felt their clinic adequately followed up with referred patients. All the psychologists surveyed offered counseling to patients seen in the rheumatology clinic, but only 21% of social workers did so.1 Reasons social workers gave for not treating patients with mental health issues included the perspective that counseling was outside the scope of practice and a lack of time or space.

Limitations of the surveys include a low response rate among rheumatologists, the small sample size of psychologists and social workers at CARRA clinics, the possibility of self-selection bias, and the anonymous nature of the responses. 

The CARRA team’s surveys showed that integrating mental health care into the pediatric rheumatology setting improved the likelihood of patients with mental health issues being referred to treatment. “Interventions that are tailored to these patients and their families, such as rheumatology-based mental health education, assessment and intervention, may improve psychosocial and overall outcomes for these patients,” Dr Knight said. “Making it happen requires resources that are not yet in place for many practices. These include implementation of screening and follow-up protocols, support for mental health professionals and other resources, and education for patients, families, and providers about mental health,” she said.


1. Knight A, Vickery M, Faust L, et al. Gaps in mental health care for youth with rheumatologic conditions: a mixed methods study of perspectives from behavioral health providers [published online June 28, 2018]. Arthritis Care Res (Hoboken). doi: 10.1002/acr.23683

2. Knight A, Weiss P, Morales K, et al. Identifying differences in risk factors for depression and anxiety in pediatric chronic disease: a matched cross-sectional study of youth with lupus/mixed connective tissue disease and their peers with diabetesJ Pediatr. 2015;167(6):1397-1403 e1.

3. Gauntlett-Gilbert J, Kavirayani A, Clinch J. Physical and social functioning in adolescents with rheumatological conditions: a study of predictorsActa Paediatr. 2013;102(3):e131-136.

4. Butler A, Van Lieshout RJ, Lipman EL, et al. Mental disorder in children with physical conditions: a pilot studyBMJ Open. 2018;8(1):e019011.

5. Davis AM, Rubinstein TB, Rodriguez M, Knight AM. Mental health care for youth with rheumatologic diseases – bridging the gapPediatr Rheumatol Online J. 2017;15(1):85.

6. Knight AM, Trupin L, Katz P, Yelin E, Lawson EF. Depression risk in young adults with juvenile- and adult-onset lupus: twelve years of followupArthritis Care Res (Hoboken). 2018;70(3):475-480.

7. Knight AM, Vickery ME, Muscal E, et al. Identifying targets for improving mental healthcare of adolescents with systemic lupus erythematosus: perspectives from pediatric rheumatology clinicians in the United States and CanadaJ Rheumatol. 2016;43(6):1136-1145.

8. Ramsey RR, Bonner MS, Ryan JL, Mullins LL, Chaney JM. A prospective examination of atittudes toward illness and depressive symptoms in youth with juvenile rheumatic diseases. J Dev Phys Disabil. 2013;25(2):171-180.