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.

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.

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.

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.

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.

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.

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.

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.

Lupus-specific health outcome measure for US patients: the LupusQoL-US version.

BACKGROUND: Patient-reported outcomes are valuable for the management of chronic diseases like systematic lupus erythematosus (SLE), but no measures have been validated for use in US-based patients with SLE. OBJECTIVES: To adapt and assess the validity and reliability of an SLE-specific quality of life (QoL) measure developed in the United Kingdom, the LupusQoL, for use in US-based patients with SLE. METHODS: Debriefing interviews of subjects with SLE guided the language modifications of the tool. The LupusQoL-US, SF-36 and EQ5D were administered. Internal consistency (ICR) and test-retest (TRT) reliability, convergent and discriminative validity were examined. Factor analyses were performed. RESULTS: The mean (SD) age of the 185 subjects with SLE was 42.5 (12.9) years. ICR and TRT of the eight domains ranged from 0.85 to 0.94 and 0.68 to 0.92, respectively. Related domains on the SF-36 correlated with the LupusQoL domains (physical health and physical function r = 0.73, physical health and role physical r = 0.57, emotional health and mental health r = 0.72, emotional health and role emotional r = 0.48, pain and bodily pain r = 0.66, fatigue and vitality r = 0.70, planning and social functioning r = 0.58). Most LupusQoL-US domains could discriminate between subjects with varied disease activity and damage. Principal component analysis disclosed five factors in the US version, with physical function, pain and planning items loading on one factor. CONCLUSIONS: These data provide evidence to support the psychometric properties of the LupusQoL-US, suggesting its utility as an assessment tool for patients with SLE in the USA.

Exploratory study on oxygen consumption on-kinetics during treadmill walking in women with systemic lupus erythematosus.

OBJECTIVE: To determine whether oxygen consumption (V o(2)) on-kinetics differed between groups of women with systemic lupus erythematosus (SLE) and sedentary but otherwise healthy controls. DESIGN: Exploratory case-control study. SETTING: Medical school exercise physiology laboratory. PARTICIPANTS: Convenience samples of women with SLE (n=12) and sedentary but otherwise healthy controls (n=10). INTERVENTION: None. MAIN OUTCOME MEASURES: V o(2) on-kinetics indices including time to steady state, rate constant, mean response time (MRT), transition constant, and oxygen deficit measured during bouts of treadmill walking at intensities of 3 and 5 metabolic equivalents (METs). RESULTS: Time to steady state and oxygen deficit were increased and rate constant was decreased in the women with SLE compared with controls. At the 5-MET energy demand, the transition constant was lower and MRT was longer in the women with SLE than in controls. For a similar relative energy expenditure that was slightly lower than the anaerobic threshold, the transition constant was higher in controls than in women with SLE. CONCLUSION: V o(2) on-kinetics was prolonged in women with SLE. The prolongation was concomitant with an increase in oxygen deficit and may underlie performance fatigability in women with SLE.

[Rehabilitation in rheumatology]. / Rehabilitation in der Rheumatologie.

Rehabilitation in rheumatology focuses on prevention of functional disorders of the musculoskeletal system, maintenance of working ability and prevention of care dependency. Drug treatment alone rarely results in long-term remission, therefore rehabilitative measures must be integrated into rheumatic care. Rehabilitative therapy in rheumatology includes physiotherapy, patient education and occupational therapy. Positive effects of physical therapy methods have been proven by various studies. Patient education and occupational therapy are important tools for stabilizing the course of the disease. To maintain positive rehabilitative results patients have to be involved in the selection of treatment measures and should take an active part in the long-term treatment process. Despite proven efficacy of physical measures there is evidence for a lack of utilization of rehabilitative therapy due to increasing cost pressure in the health care system which will further increase over time.

The development of the L-QoL: a quality-of-life instrument specific to systemic lupus erythematosus.

OBJECTIVES: Complex diseases, such as systemic lupus erythematosus (SLE), present dilemmas over choice of outcome measures. Using a battery of instruments to capture the impact of different impairments or activity limitations experienced does not provide assessment of the wider impact on quality of life (QoL). This paper describes the development and testing of a new instrument to measure QoL in systemic lupus erythematosus (L-QoL). METHODS: The development combines theoretical strengths of the needs-based QoL model with statistical and diagnostic powers of the Rasch model. Content was derived from in-depth interviews with relevant patients. Cognitive debriefing interviews assessed face and content validity. Rasch analysis was applied to data from an initial postal survey to remove misfitting items. A second postal survey assessed scaling properties, reliability, internal consistency and validity. RESULTS: A 55-item questionnaire was derived from interview transcripts. Cognitive debriefing confirmed acceptability. Rasch analysis of postal survey data (n = 95) removed misfitting items. A second postal survey (n = 93), produced a 25-item version with good item fit and stability, excellent test-retest reliability (0.92), internal consistency (0.92) and strict unidimensionality. CONCLUSIONS: It is concluded that the L-QoL should prove a valuable instrument for assessing patient-based outcome in clinical trials and practice.

Employment and work disability in systemic lupus erythematosus: a systematic review.

OBJECTIVES: Many studies have provided information on employment and work disability (WD) rates in patients with SLE, yet are often limited by small sample sizes, poor generalizability or fail to examine the risks and outcomes of WD. Our objective was to systematically review the literature on WD in SLE to identify a more generalizable point estimate and range of WD in SLE patients. METHODS: A search was conducted using Medline, EMBase, PubMed and Cochrane databases to identify publications related to SLE and employment and/or WD. Characteristics of the study samples and employment/WD data were extracted. Descriptive statistics, a test for heterogeneity and random effects models were performed to obtain pooled estimates of employment and WD rates for all patients. RESULTS: Twenty-six studies with a total of 9886 SLE patients were found; however, not all patients were reviewed for WD. Larger studies demonstrated the prevalence of WD at 20-40%, and pooled estimates found that 46% (95% CI 40%, 52%) were employed with SLE and 34% (95% CI 24%, 44%) had WD. WD was related to psychosocial and disease-related factors including age, race, socioeconomic status (SES), education, disease activity and duration, pain, fatigue, anxiety and neurocognitive involvement. CONCLUSIONS: This study provides strong evidence that costs of SLE may be very high due to job loss at a younger age in SLE patients, and identifies some risk factors associated with WD, which should be targeted by interventions aimed at preventing job loss.