A recently released guidance document approved by the ACR provides a framework for considering mental health concerns in pediatric patients with rheumatic diseases, filling a need highlighted by patient advocacy groups.1,2
Guidance Document Origin
Often under-recognized and undertreated, both anxiety and depression are common in young people with rheumatic disease, further compromising their quality of life.
One of the leaders was Tamar B. Rubinstein, MD, MS, a pediatric rheumatologist and an associate professor at the Albert Einstein College of Medicine, New York City. Much of the momentum for the development of the guidance statements originated from the patient advocacy community, which has long pushed for more holistic management of children with rheumatic conditions, she says.
Dr. Tamar Rubinstein
Intersection of Rheumatic Disease & Mental Health
The social, emotional and physiological connections between rheumatic disease manifestations and mental health problems are often complexly interwoven. In some cases, rheumatic disease processes may directly contribute to mental health issues (e.g., poor mental health and depression in neuropsychiatric lupus).
Another key contributor to the guidance statements, Andrea M. Knight, MD, MSCE, a pediatric rheumatologist and an associate professor at the University of Toronto, points out that an open question remains on how pathophysiological processes stemming from rheumatic disease may directly impact mental health (e.g., greater depression risk from increased systemic inflammation).
Moreover, mental health plays a huge role in modulating pain perception, and non-pharmacological approaches, such as cognitive behavioral interventions, can positively modulate disease features, such as pain and fatigue (e.g., in patients with lupus).3,4 Such issues as poor treatment adherence or missed clinic appointments related to mental health can directly impact disease management and outcomes.
“I have truly come to believe that I cannot effectively control patients’ rheumatologic conditions without understanding how they’re doing emotionally and socially,” says Dr. Rubinstein. “If they’re struggling, that needs to be addressed. Otherwise, I’m not going to be able to effectively care for them, and they’re not going to have the overall health outcomes we want.”
Guidance Document Development
In the process of creating the guidance document, Dr. Rubinstein shares that the development team sometimes faced a tension between the ideal world and the real world, between what they would like to see in terms of mental health support and what is practically feasible for a rheumatology workforce already struggling to meet various demands.
Like all ACR guidance documents, this serves as a resource to promote standardized, evidence-based approaches to medical care, but providers have a great deal of leeway in how to best employ the guidance in the context of their practice.
“We wanted to give a road map, something everyone could use to start somewhere, even clinicians with more minimal resources,” shares Dr. Rubinstein. “The idea is to really empower people to feel like they can do something within their agency and within the current level of resources and tools.”
The CARRA Task Force panel included pediatric rheumatologists and pediatric mental health providers, as well as patients and parents of affected children, who produced initial guidance statements. After an initial open comment period, a sampling of the CARRA membership voted on the revised statements, and 31 out of 34 achieved consensus. After further review, the CARRA Task Force decided to center the guidance on the 11 statements with the highest level of empirical support, which were reviewed and endorsed by the ACR.
Screening & Identification Guidance Statements
Dr. Andrea Knight
Seven guidance statements address different aspects to consider in identifying mental health concerns. Dr. Knight points out that much of the research to date on mental health in pediatric rheumatic diseases has focused on screening, and some providers have already been performing regular screening in their practice. Thus, compared with other areas, a greater number of guidance statements related to screening met the higher level of evidence necessary for inclusion.
Among these are recommendations to screen at least annually for anxiety, depression and suicidal ideation, using developmentally appropriate and validated screening measures, with screening occurring as soon as feasible following the initial rheumatology visit. Moreover, patients should receive more frequent screening during stressful periods (e.g., periods of greater disease activity or marked by major social changes, such as moving to a new school). Patients with positive screening should be reassessed at subsequent visits.
Most rheumatology providers are probably already attempting to connect patients to resources if a potential mental health issue becomes apparent during an appointment, but patients don’t always volunteer this information organically.
“The idea here is to do something more routine, using validated measures, so you have the best chance of capturing all kids who are struggling,” says Dr. Knight.
She adds that although more frequent screening may be ideal—many pediatric rheumatologists already performing such screening do it every three to six months—annual screening provides a starting point.
Another recommendation specifically addresses the fact that minority groups are less likely to be diagnosed and referred for mental health treatment, noting that providers should keep these potential inequities in mind when implementing mental health screening.
Dr. Knight says this can happen due to a variety of reasons, including religious or cultural differences, language barriers or systemic biases. Routine screening and standardizing practices related to mental health, alongside considerations of these potential barriers, is important to provide equitable care.
Collaborative Management
One guidance statement recommends urgent assessment by a mental health specialist, if possible, for patients with moderate to severe mental health symptoms, which should include potential medication management as well as psychological interventions. Another statement addresses patients with mild symptoms, who might instead receive follow-up care with a primary care provider.
Dr. Natoshia Cunningham
One of the behavioral health specialists leading the team was Natoshia R. Cunningham, PhD, a licensed clinical psychologist and an associate professor in the department of family medicine at Michigan State University, Grand Rapids. “We recognize the availability of pediatric behavioral health providers is limited,” she says, “so we tried to think about a stepwise approach where we reserve the more intense support for the people who have the most complex and pressing needs.”
In an ideal world, she shares, patients would receive collaborative care with real-time communication between rheumatologists and mental health providers, potentially embedded as part of a multidisciplinary pediatric rheumatology clinic team. But realistically, this is not always possible.
Dr. Rubinstein encourages providers to think about what collaborative care may look like in their particular practice. Psychiatrists, psychologists, primary care providers, adolescent medicine providers, social workers and child life specialists can all prove helpful collaborators, and sometimes school mental health programs can be an additional resource.
Dr. Cunningham also leads research that trains school providers to address chronic pain, fatigue and mental health symptoms using cognitive behavioral strategies.5
Clinical Environment & Education
One additional guidance statement focuses on providing mental health resources (e.g., brochures or web modules) that address common mental health concerns at initial diagnosis. Another highlights the need to promote ongoing discussions and education about mental health topics (consistent with developmental stage and socio-cultural background).
Dr. Cunningham points out that ongoing discussions are essential, even for patients and families who initially appear to be handling things very well, because new problems sometimes emerge over time under the burden of managing a complex disease.
“Giving people some context that mental health concerns are really common for these kids is very important, explaining that they’re managing a very complex condition, and you want to support them to feel their best,” says Dr. Cunningham. “That kind of conversation helps people understand that we can partner with them and help figure out a solution.
“I think the rheumatologist plays a really important role by getting buy-in from families, letting families know this is just part of standard care.”
Dr. Knight agrees: “There is an important element in just providing an environment and awareness to patients and families about the importance of mental health. We, in rheumatology, can be a bit of a conduit for normalizing and discussing mental health and for sharing available resources.”
Another important element of education—one not directly addressed in the guidance statements—is educating local personnel who may give mental health support, says Dr. Knight. Some may lack adequate understanding of rheumatic diseases, making them a poor fit for some patients, but rheumatologists can help educate them to build their knowledge base.
Limitations
Many of the potential guidance statements not included in the final document reached very high levels of consensus, and many touch on topics still worth considering in the context of one’s specific practice. (See supplementary Table 2 in the guidance document.)
For example, the task force discussed the possibility of identifying a mental health champion within the pediatric rheumatology clinic, a non-rheumatologist with specialized training who could give attention to this area, for example, to help maintain up-to-date resources. Dr. Cunningham notes this person may be a psychologist or social worker, if available, but a nurse or medical assistant may also fill this role.
Drs. Cunningham and Knight are leading research on training a mental health champion in the rheumatology clinic in a multi-site effectiveness/implementation trial.
Another limitation is that the screening guidance focuses on patients 12 and older, given the available literature and the characteristics of the recommended screening tests. Dr. Rubinstein adds, however, “It really is optimal to screen children of all ages for mental health concerns. There are some measures validated for younger children, and you can always ask the parent about symptoms.”
For the exact language of the guidance statements, and for further discussion of related topics, including validated mental health measures and a list of resources for addressing mental health, please see the full guidance document.
Future Directions
“I hope people read these statements and feel empowered to make some manageable changes within their practice,” says Dr. Cunningham.
Looking to the future, Dr. Rubinstein points to the emerging area in a neighboring field, psycho-gastroenterology, which studies the interaction of psychological factors, the nervous system and gastrointestinal health. She hopes to eventually see a similar field of psycho-rheumatology, where experts can leverage their psychological tools more adroitly in the setting of rheumatic disease.
CARRA has highlighted mental health in pediatric rheumatology as a research priority, and Dr. Knight hopes to see more interventional studies in this area, which are currently less well represented in the medical literature.
“I’m hoping that this inspires the adult rheumatology community to do something like this, to also think about how they’re going to address mental health in their patients,” adds Dr. Rubinstein.
Ruth Jessen Hickman, MD, a graduate of the Indiana University School of Medicine, is a medical and science writer in Bloomington, Ind.
References
- Cunningham NR, Danguecan AN, Ely SL, et al. American College of Rheumatology guidance statements for addressing mental health concerns in youth with pediatric rheumatologic diseases. Arthritis Care Res (Hoboken). 2025 Aug;77(8):953–964.
- Edison S, Trehan N, Arntsen KA, et al. A letter in support of advocating for the whole patient: Supporting new guidance on mental health in pediatric rheumatology. Arthritis Care Res (Hoboken). 2025 Aug;77(8):951–952.
- Fangtham M, Kasturi S, Bannuru RR, et al. Non-pharmacologic therapies for systemic lupus erythematosus. Lupus. 2019 May;28(6):703–712.
- Fisher E, Villanueva G, Henschke et al. Efficacy and safety of pharmacological, physical, and psychological interventions for the management of chronic pain in children: A WHO systematic review and meta-analysis. Pain. 2022 Jan 1;163(1):e1–e19.
- Cunningham NR, Adler M, Zuckerman J, et al. Helping Educators Learn Pediatric Pain Assessment and Intervention Needs Program (HELP PAIN): Program development with community partners. Children (Basel). 2024 Oct 30;11(11):1318.
