Pediatric Lupus Research Program
Tens of thousands of children and adolescents in the United States today are dealing with lupus, a chronic, incurable, autoimmune disease that requires life‐long care, and in some cases, can be fatal. Approximately 15‐20 percent of people with lupus are diagnosed prior to reaching the age of 18. It can take several years and countless visits to doctors before a definitive diagnosis of lupus is made. Moreover, a lupus diagnosis is a family affair that also affects parents, siblings, and other relatives, all of whom have questions and are on a quest for answers.
What We Know about Children with Lupus
Lupus in children and adolescents often requires more aggressive drug treatments than in adults, which comes with important ramifications for biological, psychological, and social development that have not been adequately studied. Furthermore, the best drug treatment regimens for children with lupus are currently unknown. Doctors who treat children with lupus must rely on research conducted in adults to make tough decisions about treatments and care. In every way, the need to expand clinical and basic research developments for childhood lupus is increasingly urgent.
Our Approach and Focus on Pediatric Lupus Research
Our groundbreaking efforts in clinical research benefit children with lupus. For decades, we have been ahead of the curve for research on lupus. Our national research program, Bringing Down the Barriers™, has long supported studies that have expanded our understanding of lupus in several important areas, including genetics, heart disease prevention and treatment, neuropsychiatric lupus, lupus in minority populations, and lupus biomarkers.
An even greater national agenda has been set for research on lupus in children. In 2006, we established the Michael Jon Barlin Pediatric Research Program with the generous support of the Wallace H. Coulter Foundation, in memory of Michael Jon Barlin, who passed away at the age of 24 following a long battle with lupus. With those funds, we became the first and only lupus advocacy organization in the United States with a dedicated childhood lupus research agenda. Through this program, we provide funding to facilitate childhood lupus research in areas where there is the greatest need, including lupus nephritis and neuropsychiatric lupus.
Lupus Nephritis in Children
Lupus in children tends to be more severe than in adults and often involves multiple organ systems, including the kidneys. Lupus‐related kidney inflammation, one of the most prominent and serious complications of lupus, is known as lupus nephritis. Up to 80 percent of children with lupus will develop lupus nephritis which, if not adequately controlled, can lead to kidney failure, the need for chronic dialysis or kidney transplantation, and potentially death.
Unfortunately, too few studies to date have investigated children with lupus nephritis in efforts to determine the best regimen of drugs to treat it. Currently, treatment approaches for lupus nephritis in children are not standardized and can vary widely across physicians. Thus, there is an urgent need to tailor lupus nephritis drug treatments specifically for children with lupus, rather than using guidelines established for adults.
The LFA is leading efforts in this critical area by providing funding to facilitate research on children with lupus, including
- Development of drug treatments tailored specifically for children with lupus nephritis
- Assessment of side effects of drugs being used to treat lupus nephritis in children
- Development of new blood tests to improve the tracking of lupus nephritis in children
Neuropsychiatric Lupus in Children
Neurological or psychiatric conditions that develop in people with lupus are referred to as neuropsychiatric lupus (NPSLE). NPSLE is arguably the least understood manifestation of lupus and occurs more frequently, earlier in the course of the disease, and with greater severity in children than in adults with lupus.
Approximately 25 percent of children and adolescents with lupus develop neuropsychiatric complications, such as strokes, seizures, difficulties in thinking, and even brain damage. NPSLE is difficult to diagnose and can be present even when disease activity in other organs cannot be identified. As well, NPSLE and its treatments can negatively impact cognitive ability, school performance, and impair educational progress overall.
The LFA is the only lupus advocacy group with a robust research effort focused on NSPLE in children, and is supporting advances in this area on critical topics, such as:
- Identification of risk factors and biomarkers
- Use of advanced methods to identify reduced blood flow and possible brain damage in children with lupus early in the disease course
- Development of standardized methods to assess the impact of NPSLE over time
Health‐Related Quality of Life in Pediatric Lupus
While the effects of lupus on different aspects of health and well‐being have been extensively studied in adults with lupus, their impact on children with lupus has not received the same attention. Children and adolescents with lupus often face unique and complex social and emotional issues (often related to the side effects of drugs used to treat lupus) which can greatly impact their self‐perception and overall quality of life. Their perception of their overall health can provide valuable insights about the many ways that lupus affects their life.
The transition from adolescence to early adulthood is a fragile period for young people with lupus, characterized by changes in biological and social development that can greatly influence how—or if—they will manage their disease. Especially when adolescents move away from home and are charged with caring for themselves, they can experience lupus flares (periods of increased disease activity), which, unattended, can lead to organ failure and even death. Thus, it is essential that they fully understand lupus and how to adequately manage their disease.
To this end, we recognize the great importance of properly transitioning from pediatric to adult lupus care, and is leading the way to provide significant funding to facilitate research inthis area, including:
- Evaluation of social and psychological effects of lupus and its drug treatments on children with lupus
- Investigations of disease and drug treatment effects on social acceptance, education and school attendance, and medication adherence
- Development, implementation, and validation of tools to measure quality of life in children with lupus
- Development of strategies to educate adolescents with lupus about appropriate selfcare
Accelerating Understanding of Pediatric Lupus
Our Foundation takes a strategic approach to investigating lupus in children by calling on some of the greatest minds in the field to address the most critical issues that have stood in the way of progress, and hold the greatest promise for accelerating our understanding of how lupus affects children and adolescents. Yet, despite the significant need to better understand childhood lupus and find new, safe, and effective strategies to help manage the disease, research funding to investigate lupus in children is extremely scarce. While significant progress has been made, there is still so much work to be done. Your generous contribution will allow us to continue searching for the next breakthrough that will improve care for all children and adolescents with the complex and life‐altering disease called lupus.