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- Pettersson, S, et al.
(author)
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An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life.
- 2012
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In: Scandinavian Journal of Rheumatology. - : Taylor & Francis. - 0300-9742 .- 1502-7732. ; 41:5, s. 383-390
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Journal article (peer-reviewed)abstract
- OBJECTIVE: The aim of this study was to explore the most distressing symptoms of systemic lupus erythematosus (SLE) and determine how these relate to health-related quality of life (HRQoL), anxiety/depression, patient demographics, and disease characteristics (duration, activity, organ damage).METHODS: In a cross-sectional study, patients with SLE (n = 324, age 18-84 years) gave written responses regarding which SLE-related symptoms they experienced as most difficult. Their responses were categorized. Within each category, patients reporting a specific symptom were compared with non-reporters and analysed for patient demographics, disease duration, and results from the following questionnaires: the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Systemic Lupus Activity Measure (SLAM), the SLE Disease Activity Index (SLEDAI), and the Systemic Lupus International Collaboration Clinics/American College of Rheumatology (SLICC/ACR) damage index.RESULTS: Twenty-three symptom categories were identified. Fatigue (51%), pain (50%), and musculoskeletal distress (46%) were most frequently reported. Compared with non-reporters, only patients reporting fatigue showed a statistically significant impact on both mental and physical components of HRQoL. Patients with no present symptoms (10%) had higher HRQoL (p < 0.001) and lower levels of depression (p < 0.001), anxiety (p < 0.01), and disease activity (SLAM) (p < 0.001).CONCLUSION: Fatigue, pain, or musculoskeletal distress dominated the reported symptoms in approximately half of the patients. Only patients reporting fatigue scored lower on both mental and physical aspects of HRQoL. Our results emphasize the need for further support and interventions to ease the symptom load and improve HRQoL in patients with SLE. Our findings further indicate that this need is particularly urgent for patients with symptoms of pain or fatigue.
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- Pettersson, Susanne, et al.
(author)
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Determination of the minimal clinically important difference for seven measures of fatigue in Swedish patients with systemic lupus erythematosus
- 2015
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In: Scandinavian Journal of Rheumatology. - : Taylor & Francis. - 0300-9742 .- 1502-7732. ; 44:3, s. 206-210
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Journal article (peer-reviewed)abstract
- OBJECTIVE: To estimate the minimal clinically important difference (MCID) in seven self-administered measures assessing fatigue in Swedish patients with systemic lupus erythematosus (SLE).METHOD: The participants (n = 51, women 98%, age 52.8 ± 12.1 years, disease duration 18.7 ± 13.6 years) met in groups of six to nine persons. After completing seven fatigue questionnaires [the Fatigue Severity Scale (FSS); the Multidimensional Assessment of Fatigue (MAF) scale; the 20-item Multidimensional Fatigue Inventory (MFI); the Chalder Fatigue Scale (CFS); the Short Form-36 Vitality subscale (VT); the Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F) scale; and the Numeric Rating Scale (NRS)], each respondent had a minimum of five face-to-face discussions, followed by an individual comparative assessment of their own level of fatigue (seven-grade scale). This method resulted in 260 contrasting assessments; MCIDs were first calculated using the paired differences and then established by a regression approach. Patients were asked to comment on their experience with the questionnaires and whether they captured their fatigue adequately.RESULTS: The paired approach (using 'little more fatigue' as an anchor for MCID during the face-to-face comparative assessments) provided estimates of 4.6-17.0; the regression approach provided estimates of 4.3-10.8. Estimates using the regression approach were consistently lower than those using the paired model. The MCID estimates were least favourable and fewer respondents supported the use of the NRS compared to the other self-reported questionnaires.CONCLUSIONS: All seven instruments detect MCIDs for fatigue in Swedish patients with SLE. However, the single-question measure was not supported by the MCID estimates or by comments from the respondents.
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- Regardt, Malin, et al.
(author)
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Hand exercise intervention in patients with polymyositis and dermatomyositis : a pilot study
- 2014
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In: Musculoskeletal Care. - : John Wiley & Sons. - 1478-2189 .- 1557-0681. ; 12:3, s. 160-172
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Journal article (peer-reviewed)abstract
- OBJECTIVE: The aim of the present study was to develop a 12-week hand exercise intervention for patients with polymyositis (PM) and dermatomyositis (DM) and evaluate adherence, patients' opinions of the programme design and overall feasibility, and the effect on hand function and activity limitation after the intervention.METHOD: A pilot hand exercise intervention was conducted on a convenience sample of 15 patients with reduced handgrip strength and established, inactive PM and DM. Acceptable adherence was set at 75%. The programme was evaluated based on patients' opinions regarding exertion, the movements involved and overall feasibility. Hand- and pinch-grip strength, grip ability, dexterity and activity limitation were assessed.RESULTS: Eleven of 15 patients completed the intervention, with acceptable adherence of 78-100%. Measures of handgrip strength, dexterity and activity limitation were reduced at baseline compared with normative data from the literature. Throughout the intervention, rates of perceived exertion were scored between 'moderate' and 'fairly strong'. Finger abduction and adduction were excluded from the hand exercise programme because they were not feasible to perform. Repetitions of the exercise increased gradually to a maximum of 30 per movement. Patients regarded this as too time-consuming and suggested ten repetitions daily or 10-20 repetitions 2-4 times per week. There were some individual, clinically meaningful improvements in hand function and activity limitation. A comparison between baseline and after the intervention showed that the three-jaw (tripod) pinch-grip strength (left hand) had increased (p < 0.007; z = -2.7).CONCLUSION: A hand exercise programme was found to be feasible to perform by patients with established PM or DM. The effect was limited, with few individual improvements in hand function and activity limitation, indicating a need to increase the resistance in the movements and to limit the duration of each exercise session.
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- Regardt, Malin, et al.
(author)
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Patients with polymyositis or dermatomyositis have reduced grip force and health-related quality of life in comparison with reference values : an observational study
- 2011
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In: Rheumatology. - : Oxford University Press. - 1462-0324 .- 1462-0332. ; 50:3, s. 578-585
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Journal article (peer-reviewed)abstract
- OBJECTIVES: The aims of this study were to investigate hand function in PM and DM patients and compare this with reference values in healthy individuals and also to investigate if hand function correlated with activity performance and health-related quality of life.METHODS: An observational cross-sectional study was performed in 18 women and 13 men with PM or DM with established disease. Grip force and hand mobility were assessed by Grippit and Escola Paulista de Medicina-Range of Motion scale. Activity performance was measured with myositis activities profile and health-related quality of life by short form-36 (SF-36).RESULTS: Women and men with PM and DM with mean disease duration of 6.8 (5.5) years had a significantly lower grip force than gender- and age-matched healthy individuals (women 71% and men 60%). They also had significantly lower mean values in all dimensions of the health-related quality of life instrument SF-36 compared with the Swedish population. In patients with PM and DM, the grip force correlated significantly with the ability to perform domestic activities. In women with PM and DM, the grip force correlated significantly with the health-related quality of life dimensions vitality and mental health. There were no significant differences between patients with PM and DM regarding grip force, hand mobility, activity performance or health-related quality of life.CONCLUSIONS: Patients with PM or DM have reduced grip force that could influence activity performance and health-related quality of life.
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- Regardt, Malin, et al.
(author)
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Work ability in patients with polymyositis and dermatomyositis : An explorative and descriptive study
- 2015
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In: Work. - : IOS Press. - 1051-9815 .- 1875-9270. ; 53:2, s. 265-277
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Journal article (peer-reviewed)abstract
- BACKGROUND: Polymyositis (PM) and dermatomyositis (DM) are rare, chronic inflammatory diseases leading to muscle weakness and low muscle endurance. The muscle weakness may lead to restrictions in daily activities and low health-related quality of life.OBJECTIVES: This study aimed to investigate the work situation, work ability, work-related risk factors, and influence of the physical and psycho-social work environment in patients with PM and DM.METHODS: Patients with PM/DM were assessed using the Work Ability Index (WAI), and the Work Environment Impact Scale (WEIS).RESULTS: Forty-eight patients (PM n = 25 and DM n = 23) participated (women/men: 29/19) with a mean age of 54 years (range 28-67 years, SD.10) and mean disease duration of nine years (SD.9). Forty-four percent worked full-time, 31% part-time and 25% were on full-time sick leave. More than 50% self-rated work ability as "poor" or "less good". Physically strenuous work components were present "quite to very often" in 23-79% and more in patients on sick leave ≥ 2 years. For those working, the interfering factors in the work environment concerned task and time demands. Supporting factors concerned meaning of work, interactions with co-workers and others. Self-rated work ability correlated moderately-highly positive with percentage of full-time employment, work-related risk factors and opportunities and constraints in the work environment.CONCLUSIONS: Poor self-rated work ability is common in patients with PM/DM indicating a need to identify interfering risk factors and support patients to enhance work performance.
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