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Pain and Fatigue Dominate Pediatric Lupus

March 11, 2016
Childhood-onset systemic lupus erythematosus (cSLE) may be known as the pediatric version of SLE, but according to a new study, pain and fatigue are influential symptoms that need to be addressed by practitioners.

Interview with Beth Darnall, PhD

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that effects mutiple organs, including the musculoskeletal system. About 20% of SLE cases are found in children (cSLE), who present with a more fulminant disease than adults, resulting in 2 to 3 times higher mortality.1

An ongoing study being conducted at Cincinnati’s Children’s Hospital in Ohio recently presented the results of detailed assessment of cSLE patients to see how disease severity and related symptoms, such as pain, fatigue, and poor sleep, and psychological factors, like depression, anxiety, and difficulty coping, could impact quality of life (QoL).2

Sixty-five patients (83% female; mean age 16.1 [SD 2.6]) took part in the ongoing study. They were asked to complete a number of clinical measures to assess their symptoms, while physician-completed assessments of disease activity, completed through the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) and visual analog scale (VAS) of cSLE activity (0-10; 0=inactive), were also collected.

Psychological Impact of Lupus

The interim results of the research, presented in at the annual meeting of the American College of Rheumatology (ACR), quantifiably showed cSLE patients are more likely to suffer from pain, fatigue, anxiety, and depression.

The patients were found to have a mean SLEDAI score of 5.6 (SD 5.6). Approximately one-third of cSLE patients reported relevant levels of pain, anxiety, and depressive symptoms, at 38%, 38%, and 31%, respectively. This suggests a pattern of common psychological burden associated with cSLE. However, fatigue appeared even more prevalent in the cohort, with a majority of patients (63%) reporting it.

The data also found that 60% of children presented with moderate levels of catastrophizing behavior. However, it should be noted that a typical “cut-off” for Pain Catastrophizing Scale (PCS) scores indicative of catastrophizing behavior typically are set at 20 to 25, according to Beth Darnall, PhD, a clinical associate professor of perioperative and pain medicine at Stanford University. The study instead used a more lenient, subthreshold definition (PCS ≥ 15) of catastrophizing, although this may not be a limitation of the study.

“Clinicians may often overlook a PCS score of, say, 18 because it is below the typical ‘mean score,’ but this metric may be flawed. Taken together, new studies are suggesting that treating catastrophizing earlier and at levels previously considered ‘subthreshold’ may significantly impact the course of pain and future treatment patterns,” said Dr. Darnall.

Given the ongoing nature of the study, there are further inquiries that could be made about the patients’ catastrophizing behaviors. For instance, whether the catastrophizing correlates in any way to the patients’ pain intensity scores could be relevant, as this has been found in other patient populations.3 And given the fact that these cSLE patients are teenagers, the impact of their parent’s perception of their chronic pain could have been an influence on these biopsychosocial factors, as well.

This study may not agree necessarily with past research that has found cSLE patients’ health-related QoL (HRQoL) to be directly related to disease activity, however.4 HRQoL, as measured by the PedsQL Generic Core scale and Rheumatology Module (PedsQL-GC/RM), was correlated to the psychological burdens of fatigue, anxiety, and depressive symptoms (Pearson r > 0.65) than it was to disease activity (Pearson r < 0.25).

More specifically, pain and fatigue seemed to have had the most significant impact on affected HRQoL scores, once regression analyses were used to evaluate all of the factors concurrently (P <0.001). Given the impact that pain, fatigue, and anxiety can have on the HRQoL of cSLE patients, these symptoms should be properly addressed to achieve optimal outcomes, the researchers concluded.

In future years, "we anticipate more insight into the genetics between childhood-onset SLE and adult-onset SLE to help delineate the best therapies for both subsets of patients," noted the researchers. 

All authors of ACR abstracts submit relevant conflicts of interest information to the organization, which can be found in detail at

Last updated on: March 11, 2016
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Managing Pain in Active or Well-Controlled Systemic Lupus Erythematosus