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.
