Pain, Fatigue and the Psychological Impact on Health-Related Quality of Life in Childhood-Onset Lupus

Jordan T. Jones¹, Natoshia Cunningham², Catherine Donnelly³, Susmita Kashikar-Zuck⁴ and Hermine I. Brunner⁵, ¹Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ²Behavioral Medicine & Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ³Internal Medicine, University of Cincinnati, Cincinnati, OH, ⁴Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ⁵Pediatric Rheumatology Collaborative Study Group, Cincinnati Children's Hospital Medical Center, Cincinnati, OH

Meeting: 2015 ACR/ARHP Annual Meeting

Date of first publication: September 29, 2015

Keywords: Fatigue, pain, Pediatric rheumatology, Quality of life and systemic lupus erythematosus (SLE)

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 a chronic autoimmune disease that has negative impact on health-related quality of life (HRQoL), especially when increased disease activity and damage exist, however, even with well controlled disease, HRQoL with cSLE remains lower compared to healthy populations. Chronic disease and related symptoms (pain, fatigue and poor sleep) as well as psychological factors (depression, anxiety and difficulty coping) can impair participation in developmentally appropriate activities. However, the impact of these potentially modifiable factors in relation to HRQoL in youth with cSLE is unknown. Objectives of this study were to evaluate pain, fatigue and psychological functioning of cSLE patients and examine how these factors impact HRQoL.

Methods: As part of an ongoing study, cSLE patients (n= 65; 8 – 20 years) followed at Cincinnati Children’s Hospital, were asked to complete measures of pain (Pain visual analog scale), fatigue (PedsQL Multidimensional Fatigue Scale), depression (Children’s Depression Inventory I), anxiety (Screen for Child Anxiety Related Disorders), pain coping (Pain Coping questionnaire, Pain Catastrophizing scale), sleep (Adolescent Sleep Wake Scale), and HRQoL (PedsQL Generic Core scale and Rheumatology Module, Functional Disability Inventory). Measures of disease activity (Systemic Lupus Erythematosus Disease Activity Index, and physician completed visual analog scale of cSLE disease activity [0-10; 0=inactive]) were also obtained.

Results: Subjects were 83% female with mean age of 16.1 years (SD 2.6) and mean SLEDAI score of 5.6 (SD 5.6). Fatigue was present in 63% of the patients; clinically relevant pain (Pain-VAS > 3), anxiety (SCARED ≥ 25) and depressive symptoms (CDI-I > 12) were observed in 38%, 38% and 31% of the patients, respectively; 60% had moderate catastrophizing (PCS ≥ 15). On average, the PedsQL-GC/RM for cSLE were lower than those observed in healthy populations (Table 1). Reduced PedsQL-GC/RM scores were highly correlated with greater levels of fatigue, anxiety, and depressive symptoms (Pearson r > 0.65), but had weak correlation with disease activity (Pearson r < 0.25). Regression analysis demonstrated HRQoL was most impacted by fatigue, and pain when evaluating all factors concurrently (p <0.001; Table 2).

Conclusion: cSLE is associated with decreased HRQoL, psychological aspects of health are prevalent and markedly contribute to low HRQoL. Fatigue, pain, and anxiety symptoms are present in a large subgroup of patients and need to be addressed to achieve optimal health outcomes.

Table 1. Health-related quality of life (HRQoL) and modifiable factors
Measures	Normative population mean (SD)	cSLE mean (SD)	Frequency, n (%) above cutoff value^†	p-value
HRQoL Variables
PedsQL Generic Core Scale	83.9 (12.5)	71.3 (18.4)		0.001
PedsQL Rheumatology Module	84.4 (18.0)	73.8 (18.5)		0.001
Functional Disability Index (FDI)		6.9 (7.7)
FDI > 12			11 (17%)
Modifiable Factors
Fatigue	80.5 (13.3)	57.5 (21.4)		0.001
Anxiety (SCARED)		22.3 (17.4)
SCARED ≥ 25			25 (38%)
Mood (CDI-I)		9.8 (8.4)
CDI-I > 12			20 (31%)
Pain (Pain-VAS)		2.8 (2.6)
Pain-VAS > 3			25 (38%)
Pain Catastrophizing (PCS)		18.5 (11.6)
PCS ≥ 15			39 (60%)
Pain Coping		2.6 (0.6)	*
Sleep		4.2 (0.5)	**
† Denotes cutoff values for clinically important symptoms for each variable where applicable * Denotes no established normative or cutoff value; range 1-5, higher values = worse coping ** Denotes no established normative or cutoff value; range 1-6, higher values = better sleep

Table 2. Hierarchical regression analyses predicting HRQoL (PedsQL-GC & PedsQL-RM)
Predictor Variable	Predicting PedsQL-GC				Predicting PedsQL-RM
Predictor Variable	β*	p-value	R^2**	R²change	β*	p-value	R^2**	R²change
Step 1			0.30	0.30			0.33	0.33
Pain	-0.55	<0.001			-0.57	<0.001
Step 2			0.71	0.41			0.55	0.22
Fatigue	0.70	<0.001			0.52	<0.001
Step 3			0.76	0.05			0.67	0.12
Anxiety	-0.14	0.13			-0.36	0.002
Mood	-0.21	0.06			-0.14	0.28
Coping	0.06	0.42			-0.06	0.50
Catastrophizing	-0.00	0.97			-0.04	0.72
* Represents the standardized coefficients ** Coefficient of multiple determination (how much model variance is predicted by each step, and the change with each additional step added to the model)

Disclosure: J. T. Jones, None; N. Cunningham, None; C. Donnelly, None; S. Kashikar-Zuck, None; H. I. Brunner, None.

To cite this abstract in AMA style:

Jones JT, Cunningham N, Donnelly C, Kashikar-Zuck S, Brunner HI. Pain, Fatigue and the Psychological Impact on Health-Related Quality of Life in Childhood-Onset Lupus [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/pain-fatigue-and-the-psychological-impact-on-health-related-quality-of-life-in-childhood-onset-lupus/. Accessed .

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