Kids with rheumatic and autoimmune diseases rates face an elevated risk of anxiety and depression. Researchers are working hard to improve access to mental health care and to better support children and teens living with rheumatic and autoimmune diseases.

In a special two-part series on mental health and mental health awareness, The CARRA Podcast explores how kids living with autoimmune diseases may face additional mental health issues. The first episode examined this pervasive problem, and the second episode features a conversation about some innovative solutions.

In this second episode on mental health, The CARRA Podcast host, Claudette Johnson, sits down with Dr. Andrea Knight to learn more about what is being done to help kids cope with mental health challenges. Dr. Knight is a Clinician-Investigator in the Division of Rheumatology and Associate Scientist in the Neurosciences and Mental Health program at The Hospital for Sick Children (SickKids) in Toronto. She is also the Chair of the Systemic Lupus Erythematosus (SLE) Committee for CARRA.

Check out these highlights of their conversation.

What got you interested in the topic of mental health issues among kids and teens with rheumatic diseases?

When I was starting my training as a pediatric rheumatologist, I would come across young teenagers who seemed to be struggling and having challenges with adjusting to their diagnosis, whether it be arthritis or lupus. I got the sense that maybe we weren’t asking the right questions to try to help them with some of the emotional and mental health issues that they might be having.
That’s what got me interested is really just seeing patients and feeling like we should do more to help them as they adjust to having either a new diagnosis or learning how to cope along the way.

What did you start with first in your research into mental health among these patients?

The initial focus of my research was to examine the prevalence of mental health issues among patients, particularly young adolescents with lupus. I wanted to see how common symptoms such as depression, anxiety, and thoughts of self-harm were. This was the first study I did on mental health within this context.

Our findings revealed that these symptoms were quite common among adolescents with lupus, raising concerns about the extent of the issue. It became evident that many adolescents with lupus were struggling with mental health challenges, and we weren’t really set up in rheumatology to address their needs. This study underscored the need to develop tailored interventions to support adolescents with lupus in managing their mental health.

From your vantage point, how do you think we as a community are doing, handling this mental health issues?

The first study that I did was really a long time ago – almost 10 years ago. Since then, things have come a long way, which is really exciting.

The CARRA community, rheumatologists, patients and parents, mental health providers, and other researchers are really talking about mental health as an important issue. So, that alone is a big deal because that wasn’t happening 10 years ago. One of the things that I think that CARRA as a community has made strides with is doing more research into mental health and supporting researchers to really get at the issues.

Supporting the research has made a really big difference. The other thing that’s come out of the work of the CARRA community is that we’ve developed a research agenda for mental health to guide us on how to study mental health with the big goal of improving mental health care for patients and for their families.

You helped with a big anonymous survey of patients and their families about mental health. What did you find most interesting?

The survey you’re referring to is what we call the “Partner Survey” where we partnered with patients and caregivers to help develop the survey and to lead the study alongside the researcher team.

That was a great learning experience because we really learned from each other about how to ask the right questions. There were things that we hadn’t necessarily thought about as the clinicians and the researchers because we don’t have the lived experience. So, there were questions that were included on the survey that we didn’t necessarily come up with as clinicians and researchers that actually ended up being significant in the results.

That was a great learning experience for the whole team. I think overall, the message there is that as we do more research on mental health and also develop interventions and care models, the patient and caregiver voices are really, really, really critical to not only to lead the research and find out what the problems are, but also to make sure that whatever we’re developing is actually going to cause a relevant and significant improvement in the lives of patients and their families.

What do you think is the biggest thing that might be an issue in changing our care regarding mental health? Is it like awareness or funding?

I would say both of those things are challenges. I think awareness amongst the patients, the families, and the clinicians is definitely increasing. Especially since the pandemic, people know that mental health is really important if they didn’t know that already. So, I think that that’s getting better.

Funding is always an issue as there are limited resources. Also, having enough people who are trained and have expertise to really help with the mental health issues – that’s a very limited resource. We need the people to be able to deliver the care and the interventions. I would say, that is probably our biggest limitation right now to overcome.

What strategies have you seen to help a patient and their family cope with all of these pressures coming from mental health issues?

There are a number of strategies. One is to just create an environment where patients feel comfortable about raising mental health struggles. That’s not always the case, unfortunately, but I think as the awareness comes to more increased levels, people will be more willing to create these spaces.

This can be as simple as a conversation by asking: How are you doing? How are you feeling about this? Tell me about what you’re feeling right now. It’s important to help patients feel safe actually expressing how they’re feeling, which may really not have been part of the traditional medical visit in the past. That’s one strategy that’s pretty low cost and we don’t need a specialized person to do that.

There are other strategies that we’re working on to help utilize people who are already in place – maybe already part of the rheumatology team. There are people like social workers, for example, who can help families to navigate the system to be able to find a mental health specialist. Social workers can also help with some of the mental health care themselves, as many social workers have training to be able to offer counseling, for example.

Another strategy is to have a psychologist as an actual part of the rheumatology team, which is really nice because the psychologists are able to learn about the common struggles that young patients with rheumatic conditions might be facing, and then help them to deal with them in the context of their rheumatology care.

To talk about the future when it comes to finding possible solutions to mental health issues, where is CARRA’s latest research pointing us?

There are a number of really exciting directions. Researchers are really trying to study the best ways to identify mental health issues for our patients, again, in a way that feels safe for the patients. It is also important to do this early on because we don’t want people to struggle, struggle, struggle, and then end up in a crisis situation that could have been prevented by having approaches to identify mental health issues earlier.

Researchers are working on new approaches to identify people having trouble with mental health issues early on. One of the ways to do that is to do what we call routine mental health screening. By asking about mental health routinely at every visit, we make it a normal thing, and we make people comfortable talking about mental health so that if they are having an issue, we catch it early and we’re able to connect them with the help that they need.

Another direction is to really help tackle the whole limited resources and funding issue that we were talking about. There are ways to deliver mental health care that are a little bit non-traditional. There are things like virtual sessions with a psychologist or a social worker so that people are able to access those services more easily and on a schedule that fits more with their lifestyle.

Could you talk a little bit more about how important it is to involve patients and families into research with mental health?

As we start to develop these approaches if we don’t have the input from the patients and the families, I think we often can think we’re doing something that’s helpful and then it’s not actually that helpful.

What we found out with the feedback from the patients and caregivers that we involve in the research is that the earlier we can get the patients and caregivers involved in the research project – like from the start of the development of the project – the better because then we’re not missing that critical feedback.

For example, one of the research studies that’s going on within CARRA is looking at what we call a cognitive behavioral therapy intervention that helps young patients with lupus be able to deal with pain and depression and fatigue that often many young patients with lupus face.

This intervention initially was in-person and then it was modified to be virtual. A lot of that modification happened through involvement of patients and caregivers. What we found is that the patients and the caregivers really know what changes to make to these interventions, and they help us learn from every kind of go around with the sessions about what could be better, what could make this more impactful, what can make the effects potentially even more long lasting than what they are. Having that input, not just at the end, not just at the beginning, but really ongoing as the study goes on is, is really critical.

For anyone in our CARRA community, parents or patients listening who that are just dealing with mental health challenges, what would be your message to them?

My message would be to really find a way to express what you’re feeling. This might be initially with family or friends, but I think that there is real value in letting your medical team know – whether that is your family doctor or maybe it’s a pediatrician or maybe your rheumatologist, because you see them a lot likely, or another care provider.

Maybe you’re already connected to a social worker or a psychologist or perhaps a school counselor. There are many different people who can help with mental health issues who may not be the first people you think of. A lot of people think of psychiatrists when they face a mental health issue, but there are so many different people who can help address these issues. The main message would be to not suffer in silence and try to express how you’re feeling and make sure you get connected with the resources and help that’s needed.

Learn how physicians can join CARRA and how patients/family members can get involved with CARRA.

About Dr. Andrea Knight

About Claudette Johnson

About Emily Nguyen

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