Session Information
Date: Sunday, November 8, 2015
Title: Pediatric Rheumatology – Clinical and Therapeutic Aspects Poster I: Lupus, Scleroderma, JDMS
Session Type: ACR Poster Session A
Session Time: 9:00AM-11:00AM
Background/Purpose: Childhood-onset Lupus (cSLE) is associated with decreased Health-related Quality of Life (HRQoL), and disease activity measures are often unrelated to overall perception of health. The patient’s perspective is necessary to further understand disease effect as cSLE is a chronic, episodic health condition impacting critical points in a child’s psychosocial development. The objective of this study is to assess disease experience trends in patients with cSLE by evaluating patients’ reports of psychological factors (fatigue, depression, anxiety, sleep), and their potential effect on HRQoL.
Methods: As part of an ongoing, longitudinal study, twenty cSLE patients (age 8-20 years) were assessed at two separate clinic visits approximately 6 months apart. Patients completed validated measures of fatigue (PedsQL Multidimensional Fatigue Scale), depressive symptoms (Children’s Depression Inventory; CDI-1), anxiety (Screen for Child Anxiety Related Disorders; SCARED), sleep (Adolescent Sleep Wake Scale; ASWS), and HRQoL (PedsQL Generic Core scale and Rheumatology module). Physician assessments were completed for disease activity (Systemic Lupus Erythematosus Disease Activity Index-2K), damage (SLICC/ACR Damage Index), and visual analog scales of disease activity.
Results: Patients were 90% female, mean age 16.5 years (SD 2.8), 40% African American, and 55% Caucasian. cSLE was well controlled at visit 1 and 2 with mean SLEDAI ≤ 5 in 70% and damage was absent in 75%. Fatigue was reported by 65% of patients at both visits. Clinically relevant anxiety (SCARED≥25) was reported in 40% and 35% at visit 1 and 2, respectively, which is higher than prior reported prevalence rates in cSLE patients. Clinically significant depressive symptoms (CDI-1>12) were reported in 25% and 30% at visit 1 and 2, respectively, which is similar to previous reported prevalence rates in cSLE patients. Of the five sleep quality ASWS subscales, cSLE patients have most difficulty ‘going to bed’ and ‘returning to wakefulness’, however reported similar overall mean scores to normative US teens surveyed. HRQoL measures remained lower compared to healthy populations over time (Table 1).
Conclusion: Lower HRQoL was observed over the 6 month study period, concomitant with ongoing difficulties with fatigue, anxiety and depression in many patients, despite stable disease activity and no increased damage. These findings suggest a persistent disease burden that is not being addressed by current management practices which focus on preventing tissue damage. A routine assessment of fatigue and psychological factors as part of standard of care is necessary in order to determine the need for potential behavioral interventions that could improve HRQoL for patients with cSLE. Further investigation into sleep behaviors and potential effect on sleep quality is needed.
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Table 1. Paired T-tests for Comparison of Visit 1 and 2 Measures |
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Measures |
Normative Population mean (SD) |
cSLE mean (SD) VISIT 1 |
cSLE mean (SD) VISIT 2 |
t |
p |
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HRQoL Measures |
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PedsQL Generic Core Scale PedsQL Rheumatology Module |
83.9 (12.5) 84.4 (18.0) |
74.7 (20.7) 74.7 (18.6) |
76.7 (20.6) 79.9 (19.7) |
-0.767 -2.081 |
0.453 0.051 |
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Psychological Factors |
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Fatigue (PedsQL-FS) Depression (CDI-1) Anxiety (SCARED) Sleep (ASWS)* Total Go to Bed Fall Asleep Maintain Sleep Reinitiate Sleep Return to Wake |
80.5 (13.3) 9.09 (7.0) 17.4 (12.1) |
58.5 (22.3) 8.4 (8.3) 22.0 (16.4) 4.09 (0.79) 4.05 (1.29) 4.05 (1.14) 4.26 (1.05) 4.62 (0.62) 3.47 (1.25) |
61.8 (25.7) 8.5 (9.4) 18.8 (17.4) 4.21 (0.74) 3.8 (1.27) 4.23 (0.94) 4.50 (0.99) 4.94 (0.72) 3.54 (1.21) |
-1.354 -0.101 1.775 -1.177 0.954 -1.190 -1.609 -2.188 -0.428 |
0.192 0.921 0.092 0.253 0.352 0.248 0.123 0.041 0.673 |
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Disease Measures |
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SLEDAI-2K Physician Global SLICC/ACR Damage Index |
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4.8 (4.9) 1.5 (1.4) 0.4 (0.82) |
4.5 (3.6) 1.4 (1.3) 0.4 (0.82) |
0.304 0.438 |
0.764 0.666 |
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PedsQL Generic Core and Peds QL Rheumatology module higher scores represent better quality of life. PedsQL-FS higher scores represent less fatigue. CDI-1 higher scores indicate higher level of depressive symptoms; score >12 reflects clinically significant depressive symptoms. SCARED higher scores represent more anxiety; score ≥25 reflects clinically relevant anxiety. *ASWS higher scores represent better sleep quality. No established normative or cutoff value; range 1-6 with higher values representing better sleep. SLEDAI-2K higher scores represent increased disease activity. Physician Global higher scores represent higher disease activity. SLICC/ACR Damage Index higher scores represent increased disease damage. |
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To cite this abstract in AMA style:
Donnelly C, Jones JT, Li J, Cunningham N, Kashikar-Zuck S, Brunner HI. Longitudinal Observation of Psychological Factors and Health-Related Quality of Life in Childhood-Onset Lupus [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/longitudinal-observation-of-psychological-factors-and-health-related-quality-of-life-in-childhood-onset-lupus/. Accessed .« Back to 2015 ACR/ARHP Annual Meeting
ACR Meeting Abstracts - https://acrabstracts.org/abstract/longitudinal-observation-of-psychological-factors-and-health-related-quality-of-life-in-childhood-onset-lupus/