ACR, CARRA Give First Pediatric Rheum Mental Health Guidance
DENVER — Adolescents with rheumatologic conditions should undergo screening for depression, anxiety, and suicidal ideation at least once a year at rheumatology appointments, according to a new guidance on mental health concerns from the American College of Rheumatology.
“These kids see their rheumatologist very frequently, even more frequently a lot of times than their primary care doctor, so we’re the ones who are really in a position to try to identify and facilitate interventions for mental health problems,” Andrea M. Knight, MD, MSCE, a pediatric rheumatologist and associate professor of pediatrics at The Hospital for Sick Children, Toronto, Ontario, Canada, told Medscape Medical News.
Knight is a co-author of the new, first-ever guidance statements for addressing mental health concerns in youth with rheumatologic conditions. [Editor’s note: As of this article’s publish date, the guidance is not available on the website of Arthritis Care & Research.] Until recently, too little evidence existed to develop guidelines, but “now that we’re accumulating some literature and data, we really feel like there should be guidance for providers,” Knight said.
The guidance, developed by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health Guidance Statement Taskforce and endorsed by the American College of Rheumatology (ACR), makes 11 recommendations that had sufficient supportive evidence and received at least 80% consensus agreement by a Delphi panel.
The task force was formed in 2019 with pediatric rheumatologists, pediatric behavioral health providers, patients, and parents and began with 34 statements to assess for evidence and consensus, along with input from an open comment period. The ACR Committee on Quality of Care then reviewed the statements, resulting in the list of those with the strongest empirical evidence.
The guidance statements are “important and long overdue,” CARRA member Kaveh Ardalan, MD, MS, co-director of the Duke Children’s Myositis Center and co-leader of the Duke Pediatric Lupus Clinic in Durham, North Carolina, told Medscape Medical News. “Pediatric rheumatology investigators have uncovered high levels of emotional distress that often persists even after patients achieve disease remission,” Ardalan said. “The guidance statements highlight the important role that pediatric rheumatologists have in identifying emotional distress in their patients and connecting them with evidence-based mental health care.”
The guidance statements address patients aged 12 years or older, but Knight hopes that future iterations will address younger patients as more evidence becomes available.
“Recognizing that these mental health issues are important even for younger kids — we certainly have seen that in our qualitative work — we really wanted to have guidance, but it was basically the lack of literature,” she said.
Aside from the annual screening recommendation, the only other statement with the highest level of evidence — and the only one with 100% consensus — was that patients who demonstrate moderate to severe symptoms, with or without suicidal ideation, should be urgently assessed by a mental health specialist to advise on evidence-based treatments, including possible pharmacological and/or psychological treatments.
Five statements had the second highest level of evidence, based on randomized trials:
- Patients demonstrating evidence of clinically significant symptoms at a previous screening should be reassessed at subsequent visits.
- Additional screenings should occur more often when disease activity is higher, when psychosocial changes are occurring, or during periods of transition, such as moving or starting a new school.
- Screening should occur as soon as feasible after the initial clinic visit or onset of a new rheumatologic diagnosis.
- Suicidal ideation screening should occur at least annually in a setting where resources are available to address positive screens.
- Screening measures should be developmentally appropriate, patient-reported, and validated when possible.
The guidelines include a table of more than a dozen screeners, with times to complete ranging from under 2 minutes to 30 minutes, that have been validated to ages as young as 6 years old.
The four remaining statements have level 3 evidence, relying on nonrandomized controlled studies:
- Recognizing the lower likelihood of diagnosis and referrals among minoritized groups, providers should understand and assess for disparities in evaluation and access to mental health resources particularly in minoritized groups.
- Patients with mild symptoms and no suicidal ideation should be advised to follow up with their primary care provider (PCP).
- Providers should have ongoing discussions and education about mental health, at least annually, that include discussion of warning signs and symptoms of conditions and providing information that’s developmentally appropriate and culturally sensitive.
- Patients who receive a new diagnosis should be offered resources, such as fact sheets, brochures, websites, and peer support, that address common mental health concerns in chronic disease.
Ardalan found the most helpful aspect of the guidelines to be the standard of care they set in defining “high-quality care.”
“Specifically, high quality care includes addressing not only physical health concerns but also the ‘whole patient’, which includes their psychosocial well-being,” he said. “That has at times been controversial among pediatric subspecialists, so these guidance statements represent an important advancement in terms of conveying the field has reached consensus on the importance of integrating mental health care into pediatric rheumatology practice.”
The task force recognized that barriers and challenges exist to implementing the guidance, particularly time and resources, Knight said.
“For a lot of people, it would be a new part of their practice, and that’s always something that requires some time and resources and training,” including staff involvement and new clinic protocols, she said. “There’s a lot of legwork that goes on in terms of preparing to do a practice change.”
The scarcity of pediatric mental health providers and services is another challenge, but online resources are beginning to fill that gap, Knight suggested. In addition, a CARRA workgroup is compiling resources to eventually provide a list for providers.
Two Projects Describe Success in Implementing Screening
Despite the challenges, two abstracts at the CARRA 2025: Childhood Arthritis and Rheumatology Research Alliance Annual Scientific Meeting demonstrated ways in which pediatric rheumatology clinics have already begun working to incorporate mental health screening into their practice.
One of the abstracts presented at CARRA described a quality improvement project that led a rheumatology clinic to integrate mental health screening and treatment into care for youth with juvenile dermatomyositis. Emily K. Datyner, MD, a pediatric rheumatology fellow at Vanderbilt University Medical Center, Nashville, Tennessee, said the clinic’s first goal was to increase mental health screening for all patients with juvenile dermatomyositis aged 8 years or older who came in for routine follow-up appointments. They aimed to screen 80% of patients, up from 0%, by January 2025.
Starting in January 2024, they used the Screen for Childhood Anxiety and Related Emotional Disorders for patients aged 8 years or older and the Patient Health Questionnare-9 modified for adolescents for patients aged 12 years or older. Patients completed the screenings on tablets from the front desk at check-in, with results shown to providers at the visit. Providers followed an algorithm for next steps on positive screens, which included consultation with social work, referrals to a mental health provider, and offering participation in an existing cognitive behavioral therapy (CBT) program integrated into the clinic.
They achieved 84% screening by January 2025, with 24% positive anxiety screens, 11% positive depression screens, and 9% positive suicidal ideation screens. Four patients have been referred to the integrated CBT clinic.
That quality improvement project showed that adhering to the new ACR mental health guidance statements is feasible, Ardalan said, with the clinic achieving high rates of screening in real-world practice.
“The availability of an integrated CBT intervention was also important for ensuring timely access to care for patients who screened positive,” Ardalan told Medscape Medical News. “Many other sites can learn from these approaches, though resources for electronic health record integration and accessible CBT mental health intervention are likely to be more limited at many sites and may require some time to develop.”
Another abstract presented at CARRA described the use of a change package to facilitate implementation of depression screening at pediatric rheumatology clinics at Children’s Healthcare of Atlanta; Atrium Health Levine Children’s in Charlotte, North Carolina; and Medical University of South Carolina Children’s Health in Charleston, South Carolina. Emily Vara, DO, of the Medical University of South Carolina, and colleagues reported screening 87% of patients for depression, mostly using Patient-Reported Outcomes Measurement Information System measures and the Patient Health Questionnare-9. Among the 21% of patients who screened positive, 92% received an appropriate response.
“The breadth in responses to screens — such as connecting with a PCP, referral to a social worker, and providing educational pamphlets — really underscores the two main categories of guidance statements regarding addressing mental health needs: Collaborative approaches to managing mental health concerns and providing education and a clinic environment that promotes mental health and normalizes mental health struggles,” said Tamar Rubinstein, MD, MS, a pediatric rheumatologist at Children’s Hospital at Montefiore in Bronx, New York, a leader of CARRA’s Mental Health Workgroup, and one of the coauthors of the new guidelines.
Rubinstein was not involved in that study but told Medscape Medical News that the investigators “thoughtfully approached the problem of addressing mental health from the standpoint” of determining what first steps a low-resourced clinic could take. “I think this is a great example to clinics that may have small staffs and no dedicated attached or associated mental health providers,” she said, “namely, to first assess readiness, educate staff on free and easy-to-use screeners and screens with free, non-intensive trainings, and leveraging community resources and established partnerships, such as through primary care, to help address identified concerns.”
The Vanderbilt quality improvement project was supported by CureJM Foundation, and the authors reported no disclosures. The implementation project for the Georgia and Carolinas clinics was funded by a CARRA/Arthritis Foundation Implementation Science Grant, and the authors reported no disclosures. Ardalan and Rubinstein had no disclosures.
Tara Haelle is a science/health journalist based in Dallas.