Abstract
Aim
This paper is a report of the development and psychometric testing of the Swedish version of the
B
ody
A
wareness
Q
uestionnaire to measure bodily focus of attention.
Background
The
B
...ody
A
wareness
Q
uestionnaire has been identified as an instrument with excellent psychometric properties within the concept of body awareness. It has been used in both research and clinical settings in different contexts. However, a validated Swedish version is not available.
Method
A cross‐sectional design was applied for adaptation of the Body Awareness Questionnaire and psychometric validation. Data were collected between autumn 2009 and spring 2011 from 120 patients diagnosed with rheumatoid arthritis, and from 120 students. The ‘concurrent think aloud’ method was used in a pre‐test to determine the usability of the questionnaire. Cronbach's alpha was used to test the internal consistency, and confirmatory factor analysis was performed to test the construct validity.
Results
According to the confirmatory factor analysis, neither the one‐factor model nor the four‐factor model tested in this study fulfilled the pre‐specified criteria in accordance with the Comparative Fit Index, Standardized Root Mean Squared Residual and the Root Mean Square Error of Approximation. The value of Cronbach's alpha for the Swedish version of the Body Awareness Questionnaire was satisfactory.
Conclusion
Our results indicate that the two models tested in this study do not provide a good fit to the observed data. Further refinement and testing of the Swedish version of the Body Awareness Questionnaire is therefore required. The concept of body awareness may be useful in the management of chronic disease and can be addressed in nursing.
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.
Objectives: We compared patients' assessments of systemic lupus erythematosus (SLE) disease activity by a Swedish version of the Systemic Lupus Activity Questionnaire (SLAQ) with physicians' ...assessments by the Systemic Lupus Activity Measure (SLAM) and Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K). We also explored the performance of the SLAQ in patients with short (< 1 year) versus long (≥ 1 year) disease duration.
Method: Patients filled out the SLAQ before physicians' assessments. Correlations between SLAQ total, subscales (Symptom score, Flares, Patients global) and SLAM and SLEDAI-2K, as well as between the corresponding items in SLAQ and SLAM, were evaluated using Spearman's ρ. Comparisons between patients with different disease durations were performed with Mann-Whitney U or chi-squared tests.
Results: We included 203 patients (79% women), with a median age of 45 years interquartile range (IQR) 33-57 years and disease duration of 5 years (IQR 0-14 years). Correlations between physicians' SLAM without laboratory items (SLAM-nolab) and patients' assessments were: SLAQ total, ρ = 0.685, Symptom score, ρ = 0.651, Flares, ρ = 0.547, and Patients global, ρ = 0.600. Of the symptom items, fatigue (ρ = 0.640), seizures (ρ = 0.635), and headache (ρ = 0.604) correlated most closely. Neurology/stroke syndrome, skin, and lymphadenopathy correlated less well (ρ < 0.24). Patients' and physicians' assessments were notably more discordant for patients with short disease durations.
Conclusion: We confirm that the SLAQ can be used to monitor disease activity. However, the discrepancy between patients' and physicians' assessments was greater for patients with short versus long disease duration. We encourage further use of the SLAQ, but would like to develop a shorter version which would be valuable in modern, partly web-based, clinical care.
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.
Objective
The risk for congenital heart block (CHB) associated with maternal Ro/SSA autoantibodies is low, but the possibility of treating early stages of disease has seen the introduction of Doppler ...echocardiographic surveillance programs with serial examinations during the CHB susceptibility weeks of pregnancy. The aim of the present study was to understand how Ro/SSA autoantibody-positive women having undergone Doppler echocardiographic surveillance programs and giving birth to children without CHB experienced their pregnancy and frequent ultrasound examinations.
Methods
A validated questionnaire based on data from an interview-study was distributed to Ro/SSA-positive women supervised with Doppler examinations during their pregnancy (n = 100).
Results
The response rate was 79%. The majority of the women (61%) reported that the increased number of ultrasound examinations influenced their pregnancy, but in a positive way, with qualified information and additional support from health care personnel in conjunction with the examinations. Further, the visits to the clinic provided opportunities to see the ultrasound picture of the expected infant. However, one-third of the women also reported stress in relation to the examinations.
Conclusions
Fetal echocardiographic surveillance holds many and predominantly positive effects for Ro/SSA-positive women during pregnancy in addition to the medical advantages.
To evaluate efficacy, serological responses, and predictors of response in patients with severe and refractory systemic lupus erythematosus (SLE) treated with rituximab plus cyclophosphamide.
16 ...patients entered a treatment protocol using rituximab plus cyclophosphamide. Disease activity was assessed by the SLE disease activity index (SLEDAI) and by the British Isles Lupus Assessment Group (BILAG) index.
At six months follow up, mean SLEDAI values decreased significantly from (mean (SD)) 12.1 (2.2) to 4.7 (1.1). Clinical improvement (50% reduction in SLEDAI) occurred in all but three patients. All but one patient responded according to BILAG. Remission defined as SLEDAI <3 was achieved in nine of 16 patients. Isotype analysis of anti-dsDNA antibodies revealed preferential decreases of IgG and IgA, but not IgM. Higher absolute numbers of CD19+ cells at baseline were correlated with shorter depletion time (r = -0.6).
The majority of patients improved following rituximab plus cyclophosphamide. The differential downregulation of anti-DNA of the IgG and IgA but not the IgM isotypes supports the hypothesis that cells producing pathogenic autoantibodies are preferentially targeted by the treatment. The fact that greater absolute numbers of CD19+ cells at baseline predict a less impressive clinical and serological response suggests that more flexible dosing could be advantageous.
Congenital heart block (CHB) may develop in fetuses of women with anti-Ro/SSA autoantibodies, and carries substantial morbidity and mortality. The aim was to evaluate how information on CHB is ...imparted and identify areas of improvement.
A questionnaire was distributed to anti-Ro/SSA antibody-positive women who had either participated in a surveillance programme but whose expected child did not develop CHB (n = 100, denoted Doppler-Assessed Pregnancies (DAP) group) or given birth to a child with CHB (n = 88, denoted CHB-Affected Pregnancies (CAP) group).
The response rate was 83% (157/188). Most women received the information on CHB when they were already pregnant (DAP group 60%, CAP group 83%). However, a majority of them would have wanted the information before pregnancy (DAP group 52%, CAP group 56%), and most stated that it would not have influenced their decision to have a child (DAP group 77%, CAP group 58%). The ability to both understand the information and to perceive the information as sufficient were significantly higher when someone trained in paediatric cardiology gave the information.
Our findings indicate that information on CHB should be given to women before pregnancy. The data further highlight the importance of having specific knowledge for giving relevant and understandable, yet sufficient information.
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