C. Boström

EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis

Objectives The authors aim to develop European League Against Rheumatism recommendations for the role of the nurse in the management of patients with chronic inflammatory arthritis, to identify a research agenda and to determine an educational agenda. Methods A task force made up of a multidisciplinary expert panel including nurses, rheumatologists, occupational therapist, physiotherapist, psychologist, epidemiologist and patient representatives, representing 14 European countries, carried out the development of the recommendations, following the European League Against Rheumatism standardised operating procedures. The task force met twice. In the first meeting, the aims of the task force were defined, and eight research questions were developed. This was followed by a comprehensive, systematic literature search. In the second meeting, the results from the literature review were presented to the task force that subsequently formulated the recommendations, research agenda and educational agenda. Results In total, 10 recommendations were formulated. Seven recommendations covered the contribution of nurses to care and management: education, satisfaction with care, access to care, disease management, psychosocial support, self-management and efficiency of care. Three recommendations focused on professional support for nurses: availability of guidelines or protocols, access to education and encouragement to undertake extended roles. The strength of the recommendations varied from A to C, dependent on the category of evidence (1A–3), and a high level of agreement was achieved. Additionally, the task force agreed upon 10 topics for future research and an educational agenda. Conclusion 10 recommendations for the role of the nurse in the management of chronic inflammatory arthritis were developed using a combination of evidence-based and expert consensus approach.

EULAR recommendations for patient education for people with inflammatory arthritis

Objectives The task force aimed to: (1) develop evidence-based recommendations for patient education (PE) for people with inflammatory arthritis, (2) identify the need for further research on PE and (3) determine health professionals’ educational needs in order to provide evidence-based PE. Methods A multidisciplinary task force, representing 10 European countries, formulated a definition for PE and 10 research questions that guided a systematic literature review (SLR). The results from the SLR were discussed and used as a basis for developing the recommendations, a research agenda and an educational agenda. The recommendations were categorised according to level and strength of evidence graded from A (highest) to D (lowest). Task force members rated their agreement with each recommendation from 0 (total disagreement) to 10 (total agreement). Results Based on the SLR and expert opinions, eight recommendations were developed, four with strength A evidence. The recommendations addressed when and by whom PE should be offered, modes and methods of delivery, theoretical framework, outcomes and evaluation. A high level of agreement was achieved for all recommendations (mean range 9.4–9.8). The task force proposed a research agenda and an educational agenda. Conclusions The eight evidence-based and expert opinion-based recommendations for PE for people with inflammatory arthritis are intended to provide a core framework for the delivery of PE and training for health professionals in delivering PE across Europe.

Clinical reliability of shoulder function assessment in patients with rheumatoid arthritis.

A model for functional assessment and a dynamic test of the shoulder joint were designed and tested for normal variation and clinical inter- and intra-rater reliability. The functional assessments, which covered four common shoulder functions, were compared with assessments of pain, recordings of active motion range and the results of a Health Assessment Questionnaire, in eight patients with rheumatoid arthritis according to the ARA criteria. Intra-rater reliability was satisfactory for all four functions and inter-rater reliability was satisfactory for the hand-raising and hand-to-opposite-shoulder functions but less so for hand-behind-back and hand-to-neck. A second test-retest study in 15 patients, with a slight modification of one of the functional tests, confirmed the results and improved the reliability of the modified test. The reliability of the dynamic test and of the active motion range measurement was less satisfactory or not satisfactory. No significant correlation was found between shoulder functional assessment and the Fries index, but there were positive significant correlations between active motion range and shoulder functions. It is concluded that the method presented for evaluating shoulder functions has satisfactory reliability and in the first test-retest study was more reliable than conventional motion range measurement of the shoulder joint.

Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries

Objective To describe the experiences of people with systemic sclerosis (SSc) in different European countries of functioning and health and to link these experiences to the WHO International Classification of Functioning, Disability and Health (ICF) to develop a common understanding from a bio-psycho-social perspective. Method A qualitative multicentre study with focus-group interviews was performed in four European countries: Austria, Romania, Sweden and Switzerland. The qualitative data analysis followed a modified form of ‘meaning condensation’ and the concepts that emerged in the analysis were linked to the ICF. Results 63 people with SSc participated in 13 focus groups. In total, 86 concepts were identified. 32 (37%) of these were linked to the ICF component body functions and structures, 21 (24%) to activities and participation, 26 (30%) to environmental factors, 6 (7%) to personal factors and 1 (1%) to the health condition itself. 19 concepts (22%) were identified in all four countries and included impaired hand function, household activities, paid work, drugs, climate and coldness, support from others and experiences with healthcare institutions, non-pharmacological treatment, social security and benefits. Conclusion Concepts identified in all four countries could be used for guiding clinical assessment, as well as interdisciplinary team care and rheumatological rehabilitation for patients with SSc. For a full understanding of the aspects of the disease that were most relevant to people with SSc, people with SSc from multiple countries needed to be involved.

Reliability and validity of the Fatigue Severity Scale in Swedish for patients with systemic lupus erythematosus

Objective: The aim was to translate, test, and describe aspects of reliability and validity of the Fatigue Severity Scale (FSS) in Swedish (FSS‐Swe) in patients with systemic lupus erythematosus (SLE). Methods: Patients with stable SLE, low or moderate disease activity, and low organ damage were included. Forward and back translations of the FSS were performed. Construct validity was tested with 32 women using a first Swedish translation. Feasibility, ceiling and floor effects, internal consistency, test–retest reliability, and content validity were tested on a slightly modified final version of the FSS‐Swe in a non‐selected group of patients (n = 23). Results: There were correlations (p⩽0.05) between the FSS‐Swe and overall disease activity according to the Systemic Lupus Activity Measure (SLAM) (rs = 0.48) and the SLAM Visual Analogue Scale (SLAM‐VAS) (rs = 0.46); between the FSS‐Swe and eight subscales of the Swedish 36‐Item Medical Outcomes Study Short‐Form Health Survey (SF‐36) (rs = –0.41 to –0.65) and between the FSS‐Swe and age (rs = –0.35). All patients answered all FSS‐Swe questions at both test and retest. There was one ceiling effect in one question on one occasion. The Kolmogorov–Smirnov test indicated normal distribution. Cronbachs alpha was 0.94 and corrected item‐to‐total correlation exceeded 0.3. There were no significant systematic test–retest differences, and the median‐weighted kappa coefficient was 0.75. Twenty patients understood the questions in FSS‐Swe, 18 considered they were relevant, reflected their fatigue, and that none should be excluded. Five items were suggested to be included. Conclusions: The FSS‐Swe supports construct validity, is feasible, has no important ceiling or floor effects, has satisfactory internal consistency, substantial test–retest reliability, and satisfactory content validity in the SLE patients studied. However, its sensitivity to change needs to be tested.

Aerobic capacity correlates to self-assessed physical function but not to overall disease activity or organ damage in women with systemic lupus erythematosus with low-to-moderate disease activity and organ damage

The present aim is to investigate the relationships between aerobic capacity and disease activity, organ damage, health-related quality of life (HRQL) and physical activity in 34 women with systemic lupus erythematosus (SLE) with low-to-moderate disease activity and organ damage. Mean age was 51 (SD 10) years, disease duration 17 (SD 11) years. Aerobic capacity (maximal oxygen uptake/VO2 max) was measured with a bicycle ergometer exercise test. Overall disease activity was assessed with Systemic Lupus Activity Measure (SLAM) and the modified Systemic Lupus Erythematosus-Disease Activity Index (modified SLE-DAI), overall organ damage with the Systemic Lupus International Collaboration Clinics/American College of Rheumatology-Damage Index, [SLICC/(ACR)-DI], HRQL with the 36-item Short-form health-survey (SF-36) and physical activity with a self-assessed question. The women who were low-to-moderately physically active had 89—92% (P ≤ 0.001) of VO2 max predicted for sedentary women. Maximal oxygen uptake (L/min, mL/min/kg) correlated to SF-36 physical function (rs = 0.49, rs = 0.72) (P ≤ 0.01), but not (rs ≤ 0.25) to other HRQL scales, overall disease activity or organ damage or physical activity. The correlation between aerobic capacity and physical function and the absence of correlation between aerobic capacity and physical activity, suggest a possible disease-related factor behind the low aerobic capacity. However, with no correlation between aerobic capacity and overall disease activity and organ damage, low physical activity may contribute to the low aerobic capacity in our sample. Lupus (2008) 17, 100—104.

Relationships between Measurements of Impairment, Disability, Pain, and Disease Activity in Rheumatoid Arthritis Patients with Shoulder Problems

Relationships between the results from shoulder movement impairment assessments, a shoulder-arm disability questionnaire, the disability indices Health Assessment Questionnaire (HAQ), Sickness Impact Profile (SIP) and Functional Status Questionnaire (FSQ), shoulder pain, and disease activity (ESR and the number of swollen joints) were analysed in a study evaluation outcome measurements to rheumatoid arthritis patients with shoulder problems. Sixty-seven women aged 24-82 years (mean 59.3) average disease duration 13 years were involved. The associations between shoulder movement impairment and HAQ, SIP physical and overall, FSQ and shoulder-arm disability questionnaire factor 1 were statistically significant, but of moderate magnitude (0.45 < or = r < or = 0.55, p or = 0.001). Shoulder pain correlated significantly but moderately to shoulder impairment and to FSQ (0.44 < or = r < or = 0.49, p < or = 0.001). Disease activity did not correlate to shoulder impairment, disability or shoulder pain. Despite some overlapping, impairment, disability, pain, and disease activity represent different areas and must be measured separately.

Physical activity in patients with systemic lupus erythematosus and matched controls.

Background: As physical activity reduces cardiovascular disease (CVD) in the general population, studies concerning the frequency of physical activity in patients with systemic lupus erythematosus (SLE) are needed. Earlier studies indicate that patients with SLE are physically inactive but there are few studies that compare physical activity in SLE to that in the general population. The aim of this study was to examine different aspects of physical activity in patients with SLE and population controls and to investigate how they relate to disease activity and organ damage. Methods: Two hundred and seventy-two patients with SLE and 272 population controls, individually matched for age, gender, and living region, were investigated clinically. For patients, the investigation included assessment of disease activity using the SLE Disease Activity Index (SLEDAI) and organ damage using the Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC) Damage Index. All participants filled out an extensive questionnaire concerning physical activity, exercise capacity, and sedentary behaviour. Results: The mean age of the patients was 47 (SD 15) years. Patients reported lower (p < 0.001) capacity for walking, jogging, and running and more limiting factors for these activities than controls (p < 0.001). Patients exercised less often than controls (p < 0.01) and patients with SLICC ≥ 2 points reported less physical activity on ‘low to moderate’ intensity compared to their controls (p < 0.05). Sedentary behaviour was reported by 18% of the patients and 26% of the controls (ns). Conclusion: Patients with SLE reported lower exercise capacity and less frequent exercise than controls. Additionally, patients with more organ damage reported less physical activity, and these, together with patients who have a sedentary behaviour, should be the focus of intervention programmes to support increased physical activity and exercise in SLE.

Effectiveness of Nonpharmacologic Interventions in Systemic Sclerosis: A Systematic Review

To systematically and comprehensively document the effectiveness of nonpharmacologic interventions on physical functioning and psychological well‐being in patients with systemic sclerosis (SSc).

Lifestyle habits and fatigue among people with systemic lupus erythematosus and matched population controls.

Objective The objective of this paper is to identify clusters of fatigue in patients with systemic lupus erythematosus (SLE) and matched controls, and to analyze these clusters with respect to lifestyle habits, health-related quality of life (HRQoL), anxiety and depression. Methods Patients with SLE (n = 305) and age- and gender-matched population controls (n = 311) were included. Three measurements of fatigue (Fatigue Severity Scale (FSS), Vitality (VT, from SF-36) and Multidimensional Assessment of Fatigue scale (MAF) and hierarchic cluster analysis were used to define clusters with different degrees of fatigue. Lifestyle habits were investigated through questionnaires. HRQoL was assessed with the SF-36 and anxiety/depression with the Hospital Anxiety and Depression Scale. Results Three clusters, denominated “High,” “Intermediate” and “Low” fatigue clusters, were identified. The “High” contained 80% patients, and 20% controls (median; VT 25, FSS 5.8, MAF 37.4). These had the most symptoms of depression (51%) and anxiety (34%), lowest HRQoL (p < 0.001) and they exercised least frequently. The “Intermediate” (48% patients and 52% controls) (median; VT 55, FSS 4.1, MAF 23.5) had similarities with the “Low” regarding sleep/rest whereas social status and smoking were closer to the “High.” The“Low” contained 22% patients and 78% controls (median; VT 80, FSS 2.3, MAF 10.9). They had the highest perceived HRQoL (p < 0.001), least symptoms of anxiety (10%), no depression, smoked least (13%) and reported the highest percentage (24%) of exercising ≥3 times/week. Conclusion Fatigue is common, but not a general feature of SLE. It is associated with depression, anxiety, low HRQoL and less physical exercise. Patients with SLE and population controls with a healthy lifestyle reported lower levels of fatigue. Whether lifestyle changes can reduce fatigue, which is a major problem for a majority of SLE patients, needs to be further explored.