Research may help clinicians improve quality of life among children with lupus

Lupus Foundation of America

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Overall, the impact of lupus on quality of life has been poorly understood, with the impact on children receiving even less attention. While tens of thousands of children and adolescents in the United States today are living with lupus, doctors who treat them must rely on research conducted in adults to make tough decisions about treatments and care.

Now, a new study supported by the Lupus Foundation of America and published in Arthritis and Rheumatology offers clinicians and researchers a new way to better understand how various treatments may impact the quality of life of children and adolescents living with lupus. The researchers in the study looked at the use of the National Institutes of Health (NIH) assessment tool PROMIS®, the Patient Reported Outcomes Measurement Information System, to measure the impact of the disease on quality of life among this group. PROMIS is a system of highly reliable, precise measures of patient–reported health status for physical, mental and social well–being. PROMIS measures what patients are able to do and how they feel by asking questions. Until now, PROMIS has not been validated for use in children with lupus.  

According to lead study author Jordan T. Jones, DO, Pediatric Rheumatology Fellow at the Cincinnati Children's Hospital Medical Center, “PROMIS is a good, reliable tool that assesses quality of life in childhood-onset lupus. It is more convenient and less time-consuming for patients than other quality of life measures. Everyone’s time is valuable. We don't want to burden families and patients with time-consuming tools to assess their quality of life.” 

We know that lupus patients with well controlled disease can still suffer from poor quality of life. However, to improve quality of life in childhood-onset lupus, we have to first use a reliable tool like PROMIS to assess the factors that impact quality of life in patients. Only then can we begin to target these factors and improve lives. 

“If the questionnaires used to measure quality of life are too long, patients won't complete them and providers won't use them. This translates to a missed opportunity to improve a patient's quality of life,” adds Dr. Jones.

Using PROMIS in children and adolescents with lupus allows clinicians to better design treatment plans for their patients, improve communication and overall management of disease and ultimately have a positive impact on a patient’s quality of life. More research is also underway evaluating additional benefits of the use of this tool in this population.  The Lupus Foundation of America is the only lupus advocacy organization in the United States with a robust research effort focused on quality of life specifically, and continues to break new ground by funding research to better understand how lupus impacts overall health and well-being in both children and adults. Learn more about the Foundation’s efforts here.