Dr. Linda Hiraki
Division of Rheumatology, SickKids CA
Dr. Andrea Knight
Division of Rheumatology, SickKids CA
Dr. Deborah Levy
Division of Rheumatology, SickKids CA
More new therapies for lupus have emerged over the past few years than over the past few decades. However, most have yet to be approved for Canadian children and teens with lupus. We now have the opportunity to improve discovery and access to state-of-the-art treatment for youth with lupus.
Lupus is a chronic autoimmune disease in which the immune system attacks the body’s healthy tissues, causing widespread inflammation throughout the body. When it begins in childhood, known as childhood-onset lupus, it is frequently more severe than adult-onset lupus. This is because childhood-onset lupus is more likely to affect major organs including the brain and kidneys compared to adult-onset lupus. The need for intensive and ongoing treatment can impact all dimensions of a youth’s life and may also result in permanent organ damage.
For these reasons, timely diagnosis and effective treatment is particularly critical for youth with lupus. Additionally, there are unique pediatric considerations for youth with a chronic disease that is diagnosed during a time of rapid physical and cognitive development.
Child and Youth Specific Considerations
The majority of individuals with childhood-onset lupus are diagnosed around puberty. The combination of active disease and immunosuppressive medications can delay puberty and may also result in delayed growth. Ensuring close monitoring of physical growth and development is an important part of lupus care.
School attendance and maintaining academic performance can be impacted by lupus. Children and teens may miss school for medical appointments, as well as have lengthy absences during times of disease flare. Clear communication with, and education of, schools and teachers can help students receive the supports they need to ensure academic success.
Youth with lupus also face significant mental health challenges, including higher rates of depression and anxiety compared to their peers, with approximately one in three experiencing clinically significant symptoms. Fatigue, pain, cognitive difficulties, and medication side effects can further compound emotional distress. Notably, patients and physicians report barriers to accessing appropriate mental health care, including limited resources and uncertainty about how best to integrate psychological treatment into care.
Research and Discovery to Improve Lupus Care in Youth
At The Hospital for Sick Children (SickKids), clinicians and researchers are working to close these gaps through innovative, evidence-based studies focused on youth with lupus. Patient and family engagement and participation is the foundation for all research discoveries. There are a range of studies that are advancing our knowledge.
It is truly an exciting time in lupus research and discovery. At least three clinical trials of new medications and treatments are ongoing at SickKids, with more waiting in the wings. It is only through participation of youth with lupus and their families will Canadians be able to gain wider access to these therapies. The not-so-distant future may see youth with lupus being able to safely decrease or stop many of their medications, allowing for improved quality of life.
Additionally, with the goal of improving early identification and treatment of mental health symptoms there are also ongoing studies, including TEACH, a remotely-delivered cognitive behavioural therapy program. Pilot trials show that TEACH is feasibleand effective in reducing depression, anxiety, and fatigue, while improving medication adherence among youth struggling with treatment.
Advances in research, expanding treatment options, and care that addresses both physical and emotional wellbeing are reshaping what the future looks like for youth with lupus. Through continued partnership between families, clinicians, and researchers, children and teens are being supported not just to manage their disease, but to live fuller, healthier, and more confident lives.
To learn more about SickKids Lupus Research, visit: sickkids.ca and lupuscanada.org.
