The CARRA Podcast

It's no secret that mental health challenges are on the rise for children and teenagers, but imagine being a kid with a complex, chronic health condition.

In a special two-part series on mental health, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health challenges. The first episode takes a look at this pervasive problem, and in the second episode, we’ll have a conversation about solutions and examine what is being done to help kids and teenagers.

The CARRA Podcast host, Claudette Johnson, explores how doctor’s appointments, treatments, endless tests, and medications are part of daily life for kids with a rare autoimmune diseases. Missing school, sitting out from sports, not having friends who understand the child’s condition can be lonely and mentally challenging – on top of the struggles every kid and teenager faces.

In Mental Health - Part One, Claudette talks with a pediatric psychologist who is focused on helping kids living with pediatric rheumatic diseases. Dr. Alana Goldstein Lever is a team psychologist in the Department of Rheumatology, where she works with children, teens, and young adults with rheumatic diseases. She is also an assistant professor at the Ohio State University.

Dr. Goldstein Lever explains how and why mental health issues, such as depression and anxiety, are on the rise in young people and why kids with pediatric rheumatic disease face additional challenges that can strain their mental health, such as medication side effects and physical limitations like missing recess or sports. They also may feel lonely or isolated due to living with a rare condition that their friends have never heard of and don't know how to pronounce.

This episode also examines the intersection of chronic illness, physical limitations, pain, and treatment challenges.

Dr. Goldstein Lever and Claudette Johnson discuss how there is an increasing recognition of these very significant issues facing young people and of the importance of mental health overall.

For example, Nationwide Children's Hospital has a campaign called “On Your Sleeves,” which focuses on really giving a voice to mental health issues. The hospital also has an innovative program where Dr. Goldstein Lever serves in a full-time role as the team psychologist in the Department of Rheumatology.

Want to learn more about CARRA?

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) was started by a small group of dedicated physicians working in pediatric rheumatology. CARRA was established with the mission to do collaborative research to prevent, treat, and cure pediatric rheumatic diseases.

Since the very beginning, CARRA researchers have partnered with patients and families at every stage of research.

From humble beginnings in 2002, CARRA has grown into an extensive collaborative research network with 600 members at more than 120 institutions. CARRA has built the largest observational multi-center Registry for pediatric rheumatic disease in North America, which has over 13,000 patients. CARRA also operates two biobanks – one in the United States and one in Canada.

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

Kids with rheumatic and autoimmune diseases rates are at greater risk of developing anxiety and depression.

In a special two-part series on mental health and mental health awareness, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health issues.

In this second episode on mental health, we explore how researchers are working to provide better support to children and teens living with rheumatic and autoimmune diseases.

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.

Dr. Knight got interested in mental health early in her career when she saw many teenagers struggling with adjusting to their diagnosis, whether it be arthritis or lupus. Those early experiences shaped her interest in mental health research for kids and teens with pediatric rheumatic diseases.

The initial focus of Dr. Knight’s research was to examine the prevalence of mental health issues among patients, particularly young adolescents with lupus. She wanted to see how common symptoms such as depression, anxiety, and thoughts of self-harm were.

Her findings revealed that these symptoms were quite common among adolescents with lupus, raising concerns about the extent of the issue. This study underscored the need to develop tailored interventions to support adolescents with lupus in managing their mental health.

That first study was about 10 years ago, and Dr. Knight is pleased that things have improved since then.

The CARRA community, rheumatologists, patients and parents, mental health providers, and other researchers are really talking about mental health as an important issue – and that wasn't happening 10 years ago.

One of the things that CARRA as a community has made strides with is doing research into mental health and supporting researchers to really get at the important issues, Dr. Knight explained.

The other thing that's come out of the work of the CARRA community is that they have developed a research agenda for mental health to guide them on how to continue to study mental health with the big goal of improving mental health care for patients and for their families.

Dr. Knight was also involved with a big anonymous survey of patients and their families about mental health called the “Partner Survey.” Researchers partnered with patients and caregivers to help develop the survey and to lead the study alongside the researcher team.

The patient and caregiver voices are really critical not only to lead the research and find out what the problems are, but also to make sure that whatever is being developed is actually going to result in a relevant and significant improvement in the lives of patients and their families.

Dr. Knight also discusses strategies that are being implemented to help young patients cope with mental health issues.

For example, social workers can help with some of the mental health care services, as many of them have training to offer counseling.

Another strategy that people are utilizing is to have psychologists as part of the rheumatology team. Dr. Knight explains this is an excellent approach 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.

Listen to the podcast to learn more about these possible solutions to mental health challenges in young patients with rheumatic and autoimmune diseases.

For kids managing a rheumatic disease, school can be a frustrating cycle of missed lessons and makeup work. While a 504 Plan for special accommodations can certainly help, families living with pediatric rheumatic diseases know that school-related challenges are inevitable.

There is very little evidence about the burden of school-related issues and the exact barriers that kids with pediatric rheumatic diseases face.

Mia Chandler, M.D, M.P.H, a pediatric rheumatologist at Boston Children’s Hospital, aims to change that. Last year, Dr. Chandler won a CARRA-Arthritis Foundation Career Development Award to support her research into Juvenile Idiopathic Arthritis and School-Related Concerns. Her research will assess the burden of school-related concerns – beyond physical and academic challenges to include social and psychological issues.

Learn more about her important research and the challenges that kids face at school in this special episode of the CARRA Podcast.

This episode focuses on scleroderma, a disease that the host of the CARRA Podcast was diagnosed with at nine years old. To help explain what the disease is all about, we turn to Dr. Kathryn Torok, Associate Professor of Pediatrics and Clinical and Translational Science. Dr. Torok is the director of the Pediatric Scleroderma Clinic at UPMC Children's Hospital of Pittsburgh, where she is also the co-director of the Pediatric Craniofacial Scleroderma Clinic.
Dr. Torok explains the different types of scleroderma and how doctors diagnose them, as well as the possible treatment options and the challenges that patients and physicians face with this rare disease. As a leading researcher in pediatric scleroderma who co-leads CARRA's Scleroderma Workgroup, Dr. Torok also shares the latest exciting updates in her scleroderma research.