Combined aerobic and resistance training improves physical and executive functions in women with systemic lupus erythematosus.

OBJECTIVES: Exercise is considered as an adjuvant therapeutic modality to alleviate symptoms of several rheumatic diseases. However, data regarding the benefits of exercise to patients with systemic lupus erythematosus (SLE) are relatively scant. METHODS: This study aimed to assess the effects of regular, moderate-intensity, aerobic exercise combined with resistance training on women with SLE who had no regular exercise. Patients were recruited and allocated into either the exercise or control group by their willingness. Patients in the exercise group (n = 12) underwent 12 weeks of combined exercise (five days per week), whereas those in the control group (n = 11) maintained their usual lifestyle. RESULTS: At baseline, there were no between-group differences in body composition, disease activity, two-kilometer walking test, and executive function test. After the combined exercise intervention for 12 weeks, significant improvements of both fitness index and reaction time to the stimuli in the go/no-go test were observed in the exercise group, but not in the control group. The disease activities in both study groups did not change significantly at the end of the study period. CONCLUSION: Our results suggest that regular moderate-intensity aerobic exercise combined with resistance training improves the physical and executive functions of SLE patients without exacerbating disease activity.

Efficacy of high-intensity laser therapy on arthropathy of the hands in patients with systemic lupus erythematosus: a double-blinded, randomized controlled trial.

OBJECTIVE: To determine the efficacy of high-intensity laser therapy (HILT) on arthropathy of the hands in patients with systemic lupus erythematosus. DESIGN: A double-blinded randomized, controlled study. SETTING: Outpatient setting. PARTICIPANTS: Fifty patients, 30-50-years-old, suffering from arthropathy of the hands were randomly assigned either into the experimental group, received HILT plus the routine physical therapy program or the control group, received sham HILT plus the same routine physical therapy program. INTERVENTION: All treatment interventions were applied at a frequency of three sessions per week for eight weeks. OUTCOME MEASURES: Handgrip strength, joints swelling counts, joints tenderness counts, visual analog scale (VAS) were measured before and after eight-weeks of interventions. RESULTS: There were statistically significant differences in handgrip strength, joint swelling count, joint tenderness count and VAS in favor of the study group (P < 0.05). After eight-weeks of intervention, the mean (SD) for handgrip strength, joint swelling counts, joint tenderness count, and pain score was 28.34 ± 8.3 kg, 4.4 ± 2.18, 5 ± 2.1, and 35.6 ± 13.87 mm in the study group, and 22.96 ± 8.76 kg, 7.36 ± 2.14, 9.08 ± 1.63, and 58.8 ± 10.54 mm in the control group, respectively. The MD (95%CI) for handgrip strength, joint swelling counts, joint tenderness count, and pain score was 5.38(0.53,10.23) kg, -2.96(-4.19, -1.73), -4.08(-5.15, -3.01), and -23.2(-30.2, -16.2) mm between groups, respectively. CONCLUSIONS: Adding HILT to the routine physical therapy program might be more effective than routine physical therapy program alone in improving handgrip strength, decreasing joint swelling counts, joint tenderness counts, and pain in patients with arthropathy of the hands.

Identifying clinically meaningful severity categories for PROMIS pediatric measures of anxiety, mobility, fatigue, and depressive symptoms in juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus.

PURPOSE: A key limitation to widespread adoption of patient-reported outcome (PRO) measures is the lack of interpretability of scores. We aim to identify clinical severity thresholds to distinguish categories of no problems, mild, moderate, and severe along the PROMIS® Pediatric T-score metric for measures of anxiety, mobility, fatigue, and depressive symptoms for use in populations with juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE). METHODS: We used a modified standard setting methodology from educational testing to identify clinical severity thresholds (clinical cut scores). Using item response theory-based parameters from PROMIS item banks, we developed a series of clinical vignettes that represented different severity or ability levels along the PROMIS Pediatric T-score metric. In stakeholder workshops, participants worked individually and together to reach consensus on clinical cut scores. Median cut-score placements were taken when consensus was not reached. Focus groups were recorded and qualitative analysis was conducted to identify decision-making processes. RESULTS: Nine adolescents (age 13-17 years) with JIA (33% female) and their caregivers, five adolescents (age 14-16 years) with cSLE (100% female) and their caregivers, and 12 pediatric rheumatologists (75% female) participated in bookmarking workshops. Placement of thresholds for bookmarks was highly similar across stakeholder groups (differences from 0 to 5 points on the PROMIS t-score metric) for all but one bookmark placement. CONCLUSION: This study resulted in clinical thresholds for severity categories for PROMIS Pediatric measures of anxiety, mobility, fatigue, and depressive symptoms, providing greater interpretability of scores in JIA and cSLE populations.

Cost-effectiveness of a peer mentoring intervention to improve disease self-management practices and self-efficacy among African American women with systemic lupus erythematosus: analysis of the Peer Approaches to Lupus Self-management (PALS) pilot study.

OBJECTIVE: The Peer Approaches to Lupus Self-management (PALS) program was developed as a peer mentoring tool to improve health behaviors, beliefs, and outcomes in African American women with systemic lupus erythematosus (SLE). This study aims to assess the cost of the PALS intervention and determine its effectiveness when compared to existing treatments. METHODS: Peer mentors and mentees were paired on shared criteria such as life stage, marital status, or whether they were mothers. This 12-week program consisted of a weekly peer mentoring session by telephone. Cost of healthcare utilization was evaluated by assessing the healthcare costs pre- and post-intervention. Validated measures of quality of life, self-management, disease activity, depression, and anxiety were collected. Total direct program costs per participant were totaled and used to determine average per unit improvement in outcome measures. The benefit-cost ratio and pre- versus post-intervention hospital charges were examined. RESULTS: A total of 20 mentees and 7 mentors were enrolled in the PALS program. All PALS pairs completed 12 sessions lasting an average of 54 minutes. Mentees reported statistically significant decreases in patient-reported disease activity, depression, and anxiety, with improved trends in patient activation or patient engagement in their disease and management. The total cost per patient was $1291.50, which was $107.62 per patient per week. There was a savings of $23,417 per individual receiving the intervention with a benefit-cost ratio of 18.13 per patient. CONCLUSION: These findings suggest that the PALS intervention was effective in improving patient-level factors and was cost-effective. Future research will need to validate these findings in a larger sample.

Evaluation of the self-directed format of Walk With Ease in patients with systemic lupus erythematosus: the Walk-SLE Pilot Study.

OBJECTIVE: To conduct a proof-of-concept pilot evaluation of the self-directed format of Walk With Ease (WWE), a 6-week walking program developed for adults with arthritis, in patients with systemic lupus erythematosus (SLE). METHODS: This was a single arm, 6-week pre- and post-evaluation of the self-directed WWE program to assess feasibility, tolerability, safety, acceptability, and effectiveness. Adult patients with physician-diagnosed SLE were recruited to participate during regularly scheduled visits to an academic rheumatology clinic. Self-reported outcomes of pain, stiffness, and fatigue were assessed by visual analog scales (VAS) and the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-fatigue) scale at baseline and at completion of the 6-week program. Patients also completed a satisfaction survey at the end of the program. Multivariate linear regression models were used to calculate mean changes between baseline and 6-week follow-up scores, adjusting for covariates. Mean change scores were used to estimate effect sizes (ES). RESULTS: At 6 weeks, 48 of the 75 recruited participants completed the WWE program. Participants experienced modest improvements in stiffness and fatigue (ES = 0.12 and ES = 0.23, respectively, for VAS scores; ES = 0.16 for FACIT-fatigue score) following the intervention. The majority of participants reported satisfaction with the program (98%) and benefitted from the workbook (96%). CONCLUSIONS: The self-directed format of WWE appears to reduce stiffness and fatigue in patients with SLE. It also seems to be a feasible and acceptable exercise program to patients with SLE. Larger studies are needed to confirm these findings.

Cytokine balance and behavioral intervention; findings from the Peer Approaches to Lupus Self-Management (PALS) project.

The Peer Approaches to Lupus Self-Management program sought to address the disparate impact of systemic lupus erythematosus (SLE) on African American women through a peer mentoring intervention with aims of reducing stress, anxiety, and depression. Given the association between psychological health and immune function this study examines the relationship between patient reported outcomes (PROs) in these domains and immunologic indicators of disease activity. Twenty-three African American women with SLE served as mentees in the intervention from whom PRO measures were collected at the outset, midpoint, and end of the 12week pilot study. Blood samples were collected pre- and post-intervention. Plasma was collected from the samples and cryopreserved for subsequent analyses. The strongest correlations were between the Generalized Anxiety Disorder measure and Th1/Th2 cytokine balance. Weaker correlations existed between depression and the Th1/Th2 cytokine balance. Assessment of fresh versus cryopreserved samples revealed that changes in Th1/Th2 cytokine balance within the intervention were generally equivalent, regardless of sample type. The PALS intervention resulted in significant improvements to anxiety and depression levels which were significantly associated with positive changes in Th1/Th2 cytokine balance indicating a possible underlying mechanism of action. The nature of this relationship warrants further study.

Effects of a Continuous Care Model on Patients' Knowledge and Health-Related Quality of Life in Systemic Lupus Erythematosus.

PURPOSE: The purpose of this study was to evaluate the effects of applying the continuous care model (CCM) on the knowledge level and health-related quality of life (HRQoL) of systemic lupus erythematosus (SLE) patients and their perceptions of family awareness about the disease. DESIGN: The Continuous Care Model (CCM) was implemented for 3 months on 34 SLE patients, in a pretest-posttest quasiexperimental design. METHODS: Two sets of questionnaires were designed for knowledge assessment. HRQoL was assessed by SF-36 questionnaires. Analysis was by paired t test and one-way ANOVA. FINDINGS: The continuous care model significantly improved patients' knowledge level and their perceptions of their family members' awareness of their disease. HRQoL status in SLE patients was poorer than the general population in six of eight SF-36 scales (p < .05), except for Bodily Pain and Mental Health. Postintervention scores showed improvement in six SF-36 scales (p < .001), except for Bodily Pain and Social Functioning. CONCLUSIONS: Our results underlined the advantages of applying the CCM as a comprehensive method of self-care in SLE. CLINICAL RELEVANCE: Despite many improvements in SLE care, the patients' quality of life is still much affected by SLE. Implementation of the CCM could lead to improvement in the knowledge and HRQoL of SLE patients.

Effects of two different exercise programs on chronic fatigue in lupus patients.

OBJECTIVES: Fatigue is a major complaint of patients with systemic lupus erythemasosus (SLE). While several studies have demonstrated the benefits of exercise, the effects of supervised training were never compared to those of home training. METHODS: Forty-five SLE patients suffering from fatigue, as defined by Krupp's fatigue severity scale (FSS) ≥ 3.7, were randomized in 3 groups: supervised training group (STG), home training group (HTG), and control group (CG). Primary outcome was the change in FSS at month 3. In parallel, we measured the physical working capacity measured at 75% of the predicted maximal heart rate (PWC75%/kg) and the modified Borg's scale to assess perception of exertion. RESULTS: Both STG and HTG, but not the CG, statistically improved their FSS at month 3. By contrast, the PWC75%/kg and the Borg's scale did not improve in none of the groups. Surprinsingly, compliance was similar and low (±50%) in both exercise groups. Moreover, less compliant patients improved their fatigue as much as more compliant patients. CONCLUSIONS: Patients included in the STG and the HTG similarly improved their fatigue, irrespectively of their level of compliance, raising the possibility that the beneficial effect on fatigue was not only exercise-related.

Organ Damage and Quality of Life in Antiphospholipid Syndrome.

Antiphospholipid syndrome (APS) affects young patients in the most productive years of their life, and the consequences of organic or tissue damage involve a decrease in health-related quality of life (HRQoL). While acute disease manifestations of APS are well known, information on the long-term prognosis and damage in affected patients is still very limited. Systemic lupus erythematosus (SLE) patients would be expected to experience long-term complications and even die as a consequence of APS. Organ damage in APS has been evaluated using different methods and definitions, including the SLICC/ACR Damage Index (SDI), which tend to underestimate aPL-related damage. A new damage index in APS has been proposed (DIAPS), and it seems to be more accurate than SDI. Given the implications for morbidity and mortality, it is imperative to assess accurately aPL-related damage and HRQoL in patients with APS.

Current Research in Outcome Measures for Pediatric Rheumatic and Autoinflammatory Diseases.

A rational management of children and adolescents with rheumatic and autoinflammatory diseases requires the regular assessment of the level of disease activity and of child health and well-being through the use of well-validated outcome measures. Ideally, such instruments should be simple and feasible and easily applicable in standard clinical practice. In recent years, a number of novel outcome measures have been developed and validated for use in pediatric patients with rheumatic and autoinflammatory illnesses. Furthermore, there has been an increased focus on the appraisal of child and parent perception of the disease impact. The new tools have markedly enlarged the spectrum of disorders and health domains that can be assessed in a standardized way. This progress will help to enhance the reliability of research studies and clinical trials. The aim of the present review is to provide an update of the recent advances in this field of research.

Cardiovascular training vs. resistance training for improving quality of life and physical function in patients with systemic lupus erythematosus: a randomized controlled trial.

OBJECTIVES: To compare the efficacy of cardiovascular training (CT) with resistance training (RT) in improving the health-related quality of life (HRQoL) and physical function of patients with systemic lupus erythematosus (SLE). METHOD: A randomized controlled trial was conducted with participants randomly allocated to either a CT (n = 21), RT (n = 21), or control group (n = 21). The outcomes assessed were: HRQoL using the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36), severity of depression using the Beck Depression Inventory (BDI), disease activity using the SLE Disease Activity Index (SLEDAI), and aerobic capacity using a 12-minute walk test (T12). RESULTS: Sixty-three patients (61 women and two men), aged 42.9 ± 14.4 years, with a mean body mass index (BMI) of 28.7 ± 10.6 kg/m(2), disease duration of 3.8 ± 3.3 years, and not physically active participated in the study. HRQoL improved for both exercise groups but was superior in the RT group. There was no significant difference in physical function between the intervention groups, except for aerobic capacity. Neither training programme was associated with a change in disease activity. CONCLUSIONS: Exercise intervention proved to be better than not exercising. CT was better than RT in improving HRQoL.

Work factors are associated with workplace activity limitations in systemic lupus erythematosus.

OBJECTIVE: The objective of this study was to examine the extent of workplace activity limitations among persons with lupus and to identify factors associated with activity limitations among those employed. METHODS: We conducted a cross-sectional study using a mailed survey and clinical data of persons with lupus who attended a large lupus outpatient clinic. Data were collected on demographics, health, work factors and psychosocial measures. The workplace activity limitations scale (WALS) was used to measure difficulty related to different activities at work. Multivariable analysis examined the association of health, work context, psychosocial and demographic variables with workplace activity limitations. RESULTS: We received 362 responses from 604 (60%) mailed surveys. Among those not employed, 52% reported not working because of lupus. A range of physical and mental tasks were reported as difficult. Each of the physical, cognitive and energy work activities was cited as difficult by more than one-third of participants. Among employed participants, 40% had medium to high WALS difficulty scores. In the multivariable analysis, factors significantly associated with workplace activity limitations were older age, greater disease activity, fatigue, poorer health status measured by the 36-item Short Form Health Survey, lower job control, greater job strain and working more than 40 h/week. CONCLUSION: People with lupus experience limitations and difficulty at work. Determinants of workplace activity limitations are mainly those related to workplace and health factors.

Top 10 recent developments in health-related quality of life in patients with systemic lupus erythematosus.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that has major implications for health-related quality of life (HRQoL). Improvements in the monitoring and management of SLE improves survival; however, improvement of HRQoL remains of paramount importance among these patients. Measurement of HRQoL has been recommended in clinical practice and research including drug development and testing in clinical trials. Both generic and disease specific instruments have been developed to ascertain HRQoL. In an increasingly global collaborative environment, the importance of assessing HRQoL across nations, acknowledgment of their confounders, and limitations of used instruments are critical. Here, we review selected major developments in the past 5 years highlighting: the importance of measuring HRQoL in SLE patients, the benefits and limitations of instruments that exist, and their application in research settings.

Exercise training in childhood-onset systemic lupus erythematosus: a controlled randomized trial.

INTRODUCTION: Exercise training has emerged as a promising therapeutic strategy to counteract physical dysfunction in adult systemic lupus erythematosus. However, no longitudinal studies have evaluated the effects of an exercise training program in childhood-onset systemic lupus erythematosus (C-SLE) patients. The objective was to evaluate the safety and the efficacy of a supervised aerobic training program in improving the cardiorespiratory capacity in C-SLE patients. METHODS: Nineteen physically inactive C-SLE patients were randomly assigned into two groups: trained (TR, n = 10, supervised moderate-intensity aerobic exercise program) and non-trained (NT, n = 9). Gender-, body mass index (BMI)- and age-matched healthy children were recruited as controls (C, n = 10) for baseline (PRE) measurements only. C-SLE patients were assessed at PRE and after 12 weeks of training (POST). Main measurements included exercise tolerance and cardiorespiratory measurements in response to a maximal exercise (that is, peak VO2, chronotropic reserve (CR), and the heart rate recovery (ΔHRR) (that is, the difference between HR at peak exercise and at both the first (ΔHRR1) and second (ΔHRR2) minutes of recovery after exercise). RESULTS: The C-SLE NT patients did not present changes in any of the cardiorespiratory parameters at POST (P > 0.05). In contrast, the exercise training program was effective in promoting significant increases in time-to-exhaustion (P = 0.01; ES = 1.07), peak speed (P = 0.01; ES = 1.08), peak VO2 (P = 0.04; ES = 0.86), CR (P = 0.06; ES = 0.83), and in ΔHRR1 and ΔHRR2 (P = 0.003; ES = 1.29 and P = 0.0008; ES = 1.36, respectively) in the C-SLE TR when compared with the NT group. Moreover, cardiorespiratory parameters were comparable between C-SLE TR patients and C subjects after the exercise training intervention, as evidenced by the ANOVA analysis (P > 0.05, TR vs. C). SLEDAI-2K scores remained stable throughout the study. CONCLUSION: A 3-month aerobic exercise training was safe and capable of ameliorating the cardiorespiratory capacity and the autonomic function in C-SLE patients. TRIAL REGISTRATION: NCT01515163.

Work status and its determinants among patients with systemic sclerosis: a systematic review.

OBJECTIVE: To describe work status and factors associated with work disability (WD) in patients with SSc. METHODS: A systematic search strategy in various electronic databases from 1990 to 2011 was performed. All clinical studies concerning SSc patients containing quantitative information on work status and/or factors associated with WD were selected. Extracted were study characteristics, data on work status and/or factors associated with WD. The methodological quality was evaluated in three quality aspects (selection bias, information bias and statistical analysis bias). A best evidence synthesis was employed to analyse the association between potential determinants and WD. RESULTS: Twelve studies, described in 13 papers, including 2758 SSc patients were selected. The methodological quality of one study was high. Employment rates varied between 11 and 82% after an average disease duration ranging from 2.5 to 14 years. There was moderate evidence for an association between more functional disability, more disease-specific symptoms and poorer quality of life on one side and presence of WD on the other. There was moderate evidence for the absence of an association between WD and age, sex and disease subset. Inconsistent evidence was seen for an association between WD and education and disease duration. CONCLUSION: WD is a major consequence of the disease in patients with SSc and is associated with more functional disability, more disease-specific symptoms and poorer quality of life. This emphasizes the need for research into interventions to prevent or reduce WD in patients with SSc, especially in those with a poorer health status.

Cardiovascular benefits of habitual exercise in systemic lupus erythematosus: a review.

Systemic lupus erythematosus (SLE) is an autoimmune disease with unknown etiology that usually affects women of childbearing age. Although SLE causes damage to various body tissues, including joints, skin, kidneys, heart, lungs, blood vessels, and brain, cardiovascular (CV) disease is the leading cause of mortality and morbidity in this population. Because traditional risk factors for CV disease fail to completely explain the accelerated risk in patients with SLE, the management of CV disease is exceedingly difficult. Accumulating evidence indicates that regular exercise is beneficial in improving vascular function and disease-related symptoms associated with SLE. This can be accomplished with the intensity (mild), amount (moderate), and type (a variety) of physical activity that can be performed and tolerated by most, if not all, patients with SLE. However, the common signs and symptoms of SLE, including musculoskeletal problems, CV disease, and fatigue, are factors that are known to interfere with physical activity. Accordingly, the prescription of exercise needs to be conducted carefully for this population.

Using Wii Fit to reduce fatigue among African American women with systemic lupus erythematosus: a pilot study.

Fatigue and physical deconditioning are common, difficult to treat conditions among patients with systemic lupus erythematosus (SLE). The aim of this pilot study was to evaluate the effectiveness of a home-based exercise program using the Wii Fit system in patients with SLE. Fifteen sedentary African American women with SLE experiencing moderate to severe fatigue participated in a home exercise program using the Wii Fit 3 days a week for 30 minutes each for 10 weeks. A one-group pretest-post test design was used to evaluate the effectiveness of this program. Primary outcome measure was severity of fatigue. Secondary outcome measures were body weight, waist circumference, fatigue-related symptoms of distress, activity level, and physical fitness. At the completion of the 10-week Wii Fit exercise program, participants perceived fatigue severity as measured by the Fatigue Severity Scale to be significantly decreased (p = 0.002), and body weight and waist circumference were significantly reduced (p = 0.01). In addition, anxiety level, as measured by Hospital Anxiety and Depression Scale, and overall intensity of total pain experience, as measured by Short-form of the McGill Pain Questionnaire, were also significantly reduced (p < 0.05). Findings provide preliminary evidence that the Wii Fit motivates this population to exercise, which leads to alleviation of fatigue and reduced body weight, waist circumference, anxiety level, and overall intensity of total pain experience.