Women with Primary Sjögren´s Syndrome Assessment and Treatment A Physiotherapeutic Perspective

Primary Sjögren´s syndrome (primary SS) is a systemic autoimmune rheumatic disease characterized by lymphocytic infiltrations in the exocrine glands leading to classic dryness complaints such as dry eyes and dry mouth. Non-exocrine complaints also occur, e.g. fatigue, myalgia and arthralgia, as well as disturbed mood. The overall purpose of this work was, from a physiotherapeutic perspective, to investigate the consequences of the disease on body function, activity and participation in women with primary SS, in order to obtain a knowledge base suitable for physiotherapeutic interventions. The purpose was also to evaluate the effect of an exercise programme. The first study included 43 women with primary SS and 44 women with fibromyalgia (FMS), who, with the exception of one woman with primary SS, also participated in the second study together with 59 women with rheumatoid arthritis (RA). In these two studies musculoskeletal pain and learned helplessness (I) and health-related quality of life (HRQoL) (II) were evaluated. It was found that musculoskeletal pain was prevalent in most of the women with primary SS and that the prevalence of FMS was increased in this group compared with the general population. Patients with primary SS, classified according to the American-European Consensus Criteria, had less pain than patients classified according to the Copenhagen criteria. Learned helplessness did not differ between the women with primary SS and the women with FMS. HRQoL, according to SF-36, was decreased in the women with primary SS, FMS or RA compared with normal data for Swedish women. The women with primary SS tended to score better on the physical scales and worse on the mental scales than the women with RA. The women with FMS scored worse on all scales. Poor HRQoL was associated with a higher level of pain in the women with primary SS. The third study included 51 women with primary SS and 51 age- and gender- matched control subjects. Components of physical capacity, anxiety, depression and fatigue were investigated. The women with primary SS had a slightly to moderately decreased physical capacity and a higher level of anxiety, depression and fatigue than the control subjects. Aerobic capacity was associated with fatigue in the women with primary SS as were also anxiety, depression and activity limitation according to HAQ. In the fourth study a fatigue questionnaire, the Profile of Fatigue (ProF), specifically designed for patients with primary SS, was translated from English to Swedish and evaluated regarding reliability and validity. Seventy patients with primary SS and 48 control subjects participated in the validation process. Two experienced rheumatologists judged the content of the questionnaire. The ProF was found to be sufficiently reliable and valid for the assessment of fatigue in primary SS. In the fifth study, 21 women with primary SS (one women also had mild systemic erythematosus) were allocated to either a 12-week aerobic exercise programme or to a flexibility programme. Aerobic capacity, fatigue, anxiety, depression and HRQoL were evaluated. After 12 weeks, aerobic capacity, fatigue as measured with a visual analogue scale and depression were significantly improved in the aerobic exercise group compared with flexibility exercise group, while no differences were found in anxiety, HRQoL or fatigue as measured with the ProF. I found in these five studies that musculoskeletal pain was a common symptom in women with primary SS. HRQoL was reduced and was associated with pain intensity. Components of physical capacity were slightly to moderately decreased and associated with fatigue. Aerobic capacity, fatigue and depression were alleviated by an aerobic exercise programme. The ProF is reliable and valid for the measurement of fatigue in primary SS. The sensitivity to change and responsiveness are however unclear and further testing is required in this respect. From these findings I conclude that physiotherapeutic interventions such as methods for pain relief and aerobic exercise may be useful in the treatment of patients with primary SS

The role of exercise in the rehabilitation of patients with systemic lupus erythematosus and patients with primary Sjögren's syndrome.

Purpose of review: The purpose of this review is to present an update on the evidence-based effects of exercise in systemic lupus erythematosus and in primary Sjögren's syndrome. Recent findings: Physical capacity is reduced in both systemic lupus erythematosus and primary Sjögren's syndrome and fatigue is a dominating and disabling symptom in both conditions. The documentation on the effect of exercise on the rehabilitation of patients with systemic lupus erythematosus and primary Sjögren's syndrome is sparse; the studies are few and the sample sizes often small. The available studies indicate that patients with systemic lupus erythematosus of mild to moderate disease activity as well as patients with primary Sjögren's syndrome benefit from exercise of moderate to high intensity. Positive effects can be expected with regard to aerobic capacity, fatigue, physical function and depression. Summary: There is reason to believe that exercise should be included in the rehabilitation of patients with mild to moderate systemic lupus erythematosus and patients with primary Sjögren's syndrome. Further research is needed and should aim to evaluate the effect of exercise on groups with varying degree of disease severity and to document the long-term impact on the disease

Effects of exercise on aerobic capacity and fatigue in women with primary Sjogren's syndrome.

Objective. To investigate the effect of a moderate to high intensive exercise program on two primary outcomes (aerobic capacity, fatigue), and three secondary outcomes [anxiety, depression and health-related quality of life (HRQoL)] in women with primary Sjögren's syndrome (primary SS). Methods. Twenty-one women with primary SS were ranked according to degree of fatigue and allocated to an exercise group (TG; n = 11) or a control group (CG; n = 10). The exercise method was Nordic walking for 45 min three times a week for 12 weeks. Outcome measures assessed at baseline and after 12 weeks were aerobic capacity, fatigue, ratings of perceived exertion (RPE), anxiety, depression and HRQoL. Results. Nine women in the TG and 10 women in the CG completed the study. Analysis showed significant differences between the groups regarding aerobic capacity (P = 0.03), fatigue (P = 0.03), RPE (P = 0.03), and depression (P = 0.02) with the better values for the TG. There were no differences in anxiety or HRQoL. Conclusion. Our findings support the use of appropriate aerobic exercise in the treatment of primary SS

Sleepiness or fatigue? Can we detect treatable causes of tiredness in primary Sjogren's syndrome?

Objective. To study the prevalence of fatigue and daytime sleepiness in primary SS (pSS) and analyse predicting sleep disturbing factors and other potential determinants of fatigue and sleepiness. Method. Seventy-two consecutive pSS patients and 59 age-matched healthy controls were compared. Assessment instruments were profile of fatigue (ProF), visual analogue scale fatigue, Epworth Sleepiness Scale (ESS), Hospital Anxiety and Depression Scale, restless legs syndrome (RLS) Diagnostic Criteria and Lund University Sleep Questionnaire. In addition, markers of immune disturbance, inflammation and disease activity using the European League Against Rheumatism SS Disease Activity Index were analysed in patients. Results. Fatigue, especially somatic fatigue, is the main problem for pSS patients. Sleepiness is a minor problem. Patients had significantly more often anxiety, nocturia and woke up more frequently during the night than controls. The factors that predicted daytime fatigue in pSS patients were anxiety and nightly awakenings due to pain. Nocturia was frequent but was not associated with fatigue or sleepiness. RLS, depression and sicca symptoms contributed to fatigue in the univariate regression analysis only. Conclusions. This is the first study demonstrating not only the presence of disturbed sleep, but also that nightly musculoskeletal pain and other sleep disturbing factors and anxiety significantly influence fatigue. Management strategies aimed at these aspects should therefore be included in future trials for treatment of fatigue in pSS

Physical capacity in women with primary Sjögren's syndrome: a controlled study.

Objective To examine physical capacity (aerobic capacity, joint mobility, muscle function, and standing balance) in women with primary Sjögren's syndrome (primary SS) and to examine the correlation of aerobic capacity with fatigue, functional disability, and mental aspects (anxiety and depression). Methods Fifty-one women who fulfilled the European Community criteria for primary SS and who had anti-SSA/SSB antibodies or a positive lip biopsy were compared with 51 age-matched controls. Physical capacity, fatigue, functional disability, anxiety, and depression were investigated by means of questionnaires and clinical examinations. Results The women with primary SS had significantly decreased aerobic capacity (VO2max = 28.7 versus 32.4 ml/kg/minute; P = 0.013), shoulder mobility (58 versus 59 scale points; P = 0.003), grip strength (214 versus 259 N; P = 0.000), isokinetic strength of the knee flexors (51 versus 56 Nm; P = 0.049), endurance of the knee flexors (620 versus 712 J; P = 0.008), and standing balance (25 versus 28 seconds; P = 0.006) when compared with the reference group. For the primary SS patients, greater effort was needed to carry out the test of aerobic capacity, and they experienced more pain during the shoulder mobility test. Aerobic capacity correlated with the fatigue experienced (r = -0.33, P = 0.022) but not with functional disability or mental aspects. Conclusion The results indicate that women with primary SS have decreased physical capacity, which may be related to the experience of fatigue

Health care quality indicators on the management of rheumatoid arthritis and osteoarthritis: a literature review.

Objective. To make an inventory of quality and content of currently available and published sets of health care quality indicators (HCQIs) for RA and OA.Methods. A systematic review was performed for documents on the development and/or a description of HCQIs for the management of patients with RA and/or OA, using the PubMed, EMBASE, Web of Science, Cochrane and CINAHL databases up to 1 December 2010 and official websites of arthritis organizations. The following data were extracted: general characteristics, contents and quality of developmental process (six aspects related to the definition of target, target group and stakeholders, patient involvement, description of development and test of validity).Results. The search yielded 498 potentially eligible references and two websites, with ultimately six original HCQI sets for RA and/or OA being identified (one for RA and OA, two for OA and three for RA). The number of HCQI ranged from 7 to 27, with the majority being process indicators. No conflicting indicators between the HCQI sets for one condition were seen. Concerning the quality of the developmental process, all six sets lacked patient involvement.Conclusion. Only a limited number of HCQI sets for the management of OA and RA are available, mainly including process indicators. The developmental process was methodologically suboptimal in all cases. As improvement of health care quality is an ongoing process, there is a need for development of HCQIs covering different aspects of health care quality (structure, process and outcome) and using appropriate methodology

Cultural Adaptation, Validity, Reliability and Responsiveness of the Swedish Version of the Effective Musculoskeletal Consumer Scale (EC-17).

BACKGROUND: Endorsed by the Outcome MEasures in Rheumatoid Arthritis in Clinical Trials (OMERACT) group, The Effective Consumer Scale (EC-17) was developed in English for patients with musculoskeletal diseases to assess the skills and perceptions important for participating in and managing health care. The objective of this study was culturally to adapt the questionnaire into Swedish and to study its psychometric properties. METHODS: After translation of the questionnaire into Swedish, two different groups of outpatients from two specialist rheumatology departments participated in the study. Face validity was assessed, together with internal consistency, test-retest and responsiveness of the questionnaire. Construct validity was assessed using the Arthritis Self-Efficacy Scale (ASES), and responsiveness to a five day educational intervention was analysed using the standardized response mean (SRM). RESULTS: Analyses were based on 124 patients with inflammatory rheumatic diseases, of whom 50 attended the intervention. Data quality met the requirements, with missing values 0.4, ranging from 0.49 to 0.88. Cronbach's alpha was 0.93 and 0.95 for the two groups. The test-retest correlation (ICC(2.1) ) was 0.94, and there was a significant improvement as a result of the intervention, with an SRM of 0.43. However, the questionnaire had a higher construct validity with the ASES subscale 'other symptoms' than hypothesized a priori (r(s) 0.75). CONCLUSION: The Swedish version of the EC-17 met the required recommendations for face validity, internal consistency, test-retest reliability and responsiveness. Its construct validity needs to be further established, and the questionnaire needs further testing in different groups of patients and in different interventions

Cost of Illness from the Public Payers' Perspective in Patients with Ankylosing Spondylitis in Rheumatological Care.

OBJECTIVE: To estimate the incremental costs to public payers for patients with ankylosing spondylitis (AS) of working age compared with reference subjects from the general population. METHODS: We investigated total costs for 3 years (2005-2007) in 116 outpatients under 66 years of age with AS attending rheumatological care in Malmö, Sweden. Mean (SD) age was 46 (11) years and mean (SD) disease duration was 24 (11) years. Two subjects perAS patient matched for age, sex, and residential area were selected from the Population Register to serve as a reference group. We retrieved data concerning sick leave, prescription drugs, and healthcare consumption from Swedish health-cost registers by the unique personal identification numbers. RESULTS: The mean total cost for the 3-year period 2005-2007 was US $37,095 (SD$30,091) for patients with AS, and $11,071 (SD$22,340) for the reference group. The mean indirect cost was $19,618 and$5905, respectively. Mean cost for healthcare was $8998 for the AS patients and$4187 for the reference subjects, and mean cost for drugs was $8479 and$979, respectively. The patients with AS treated with biological therapy constituted 80% of the total drug cost, but just 40% of the cost for disability pension. CONCLUSION: Patients with AS had 3-fold increase in costs compared to reference subjects from the general population, and the drug costs were almost 10 times as high. Production losses (indirect cost) represented more than half of total cost (53%)

Health care quality indicators on the management of rheumatoid arthritis and osteoarthritis: a literature review

To make an inventory of quality and content of currently available and published sets of health care quality indicators (HCQIs) for RA and OA