Background/Purpose:  cSLE can result in considerable decrements in health-related quality of life (HRQOL) for young patients. Youth with cSLE experience a myriad of symptoms, including fatigue, pain episodes, and depressive symptoms. While cognitive-behavioral (CBT) techniques for coping with pain, mood symptoms, and sleep problems have shown promise in treating youth with those respective conditions, there has not yet been a CBT approach developed to meet the unique needs of the cSLE population. Thus, the current study aimed to develop and pilot test a CBT protocol to meet the needs of adolescents and young adults with cSLE by addressing pain symptoms, depressive symptoms, and sleep difficulties. The goal was to develop a CBT intervention to improve pain levels, fatigue, depressive symptoms, and health-related quality of life (HRQOL).

Methods:  The treatment involved 6 one-hour individual sessions held weekly with a doctoral level psychologist who specializes in CBT. Parent/caregivers were involved in 2 of the 6 sessions and participated in weekly check-ins. The goal of the sessions was to improve coping with pain symptoms, depressive symptoms, and fatigue. Content included psychoeducation (i.e., how fatigue, pain, and mood symptoms relate to cSLE), training in cognitive (i.e., problem solving, cognitive restructuring) and behavioral strategies (e.g., activity pacing, behavioral activation) aimed at improving symptoms. At baseline and post-treatment, participants completed self-report outcome measures on pain levels (Visual Analog Scale; 0-10 VAS), fatigue (PROMIS Pediatric Fatigue- short form), depressive symptoms (Children’s Depression Inventory 2; CDI 2), and HRQOL (PedsQL Generic Core Scales).

Results:  All participants were diagnosed with cSLE by their rheumatologist. Five of 8 participants (mean,range (years): 15.2/14-17) have completed the 6-session intervention, with 2 participants mid-treatment. At baseline, the average VAS score was 3.4, PROMIS Fatigue score was 18.8, and CDI score was 14.75. For treatment completers, PROMIS Fatigue reduced by 5 points (Z=-2.023, p>0.05), and CDI reduced by 3.5 points (Z=-1.841, p=.066). VAS and PedsQL scores did not change significantly post treatment.

Conclusion:  Participants who completed CBT experienced significant reductions in symptoms of fatigue and depressive symptoms at post treatment. These preliminary results indicate that CBT may be a feasible and potentially beneficial self-management approach for adolescents who are experiencing mood, and/or fatigue symptoms associated with cSLE. Although there was not an immediate effect on pain or HRQOL at post-treatment, improving patient symptoms such as mood and fatigue may ultimately improve functioning and impact these domains over time.