Program for kids with lupus can change lives in 6 sessions

Often diagnosed in the teenage years, childhood-onset lupus is a serious, potentially fatal autoimmune disease that causes the body to attack itself. For as many as 10,000 U.S. youths, it can bring extreme fatigue, mood changes, pain and inflammation that affect many parts of the body.

Now, these kids have an option for treatment that improves their quality of life without requiring more medicine. New research led by a Michigan State University scientist shows that a six-session remote psychological therapy program can help young lupus patients better manage their symptoms. The program, Treatment and Education Approach for Childhood-onset lupus, or TEACH, includes cognitive behavioral therapy and mindfulness meditation strategies to help kids learn to manage their symptoms of depression, fatigue and pain. Sessions are offered remotely by a trained behavioral health care provider.

Created by Natoshia Cunningham, a Red Cedar Distinguished Professor, associate professor and pediatric psychologist in the Department of Family Medicine at the MSU College of Human Medicine, along with her colleagues, TEACH was first developed 10 years ago. Cunningham says she has a passion for creating customized behavioral health programs for kids who have chronic painful health conditions and co-occurring mental health symptoms.

“I was really drawn to helping young lupus patients because they have a complex medical condition,” Cunningham said. “The associated mental health challenges can be complicated and many children who have lupus are from marginalized groups. Despite the need, they are not necessarily identified nor provided access to behavioral health care. There was also exceptionally little research for this population.”

As a psychologist and researcher, Cunningham’s work focuses on what children and families need most — tools that help kids get back to being kids. Her approach teaches them how to calm their bodies, cope with stress and manage other common symptoms like fatigue. This complements the intricate medical and medication regimen young lupus patients often need.

Isabella Colindres, a former TEACH program participant, is now a collaborator for ongoing TEACH research.

“I was struggling with the day-to-day challenges of lupus when I had the opportunity to participate in the TEACH trial,” Colindres said. “I was diagnosed at 16 and as a teenager navigating a chronic illness at the start of the COVID-19 pandemic, TEACH made a meaningful difference in my life.

“I felt supported, understood and safe in a way I had never experienced in a medical setting before,” she added. “Over those six weeks of remote cognitive behavioral therapy sessions, I learned a practical skill set that helped me manage fatigue, pain and the heavy mental load and brain fog that often accompany lupus. I started sleeping better, thinking more clearly and feeling more in control of my health, especially as I learned to challenge intrusive and unhelpful thoughts. TEACH genuinely helped me feel like myself again.”

The effectiveness of the TEACH program was recently evaluated in young lupus patients and the results are published in Arthritis Care and Research. In keeping with Colindres’ personal experience, the program was found to be a success. The research, a pilot randomized controlled trial, was funded by an Arthritis Foundation Childhood Arthritis and Rheumatology Research Alliance transdisciplinary research grant and included six clinical sites in the U.S. and Canada.

“Our study found that children who participated in TEACH showed clear improvements in how they functioned day to day,” Cunningham said. “They slept better, felt less depressed and anxious, and were more able to handle daily routines. While the program doesn’t make the disease go away, the study shows that kids who have lupus can start feeling better using behavioral health strategies that address the most common symptoms of this disease.”

For adults who support youth with lupus such as parents and teachers, the TEACH program offers reassurance and relief. Often, invisible chronic painful autoimmune conditions like lupus in children are often misunderstood, leaving families and other adults feeling helpless. Cunningham’s work helps kids and the adults who support them take control of their condition. Parents also learn coping strategies that reduce stress for the entire family and better support their child without fear or frustration.

“Unfortunately, young patients with lupus tend to have a more severe disease course than adults,” said Andrea Knight, pediatric rheumatologist, Canada Research Chair in Mental Health and Chronic Disease of Childhood at Toronto Hospital for Sick Children, and collaborator on the TEACH program and research. “And diagnosis often comes during the teen years. Kids can go from being healthy to having a potentially fatal condition that requires a lot of changes in their life. This also affects the family dynamic.” 

Knight added that while advancements in medical treatments for lupus are being made, there’s very limited support for the mental or emotional challenges that can accompany the disease, which is why TEACH is so innovative and important. 

Cunningham, Knight and their collaborators are now working on a follow-up study funded by the U.S. Department of Defense Lupus Research Program’s Transformative Vision Award. This research includes the implementation of TEACH in seven rheumatology clinics, which is where lupus patients are typically treated, and evaluation of longer-term results. For this ongoing project, TEACH is delivered by trained mental health and health care professionals who are already part of local rheumatology teams. The goal is to implement an accessible and effective approach to care.

The researchers are committed to making sure TEACH benefits as many kids who have lupus as possible. Because it’s a program that’s offered virtually and with online self-management support tools, it can easily extend to a wider range of patients in the future.

“People are very excited about finding ways to help youth cope with lupus,” Knight said. “Parents appreciate having something available for their children, and patients have said that having the space and time to talk about how they are feeling with somebody who’s trained to support them is very appreciated.”