E. Welin Henriksson

An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life

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.

Health-related quality of life, fatigue and mood in patients with SLE and high levels of pain compared to controls and patients with low levels of pain

Objective The objective of this paper is to investigate health-related quality of life (HRQoL), fatigue, anxiety and depression in patients with systemic lupus erythematosus (SLE) and higher levels of pain and to compare them to patients with lower levels of pain and controls. Method Patients were dichotomized into two groups based on SLE-related pain score on the visual analog scale (VAS): low-pain group (76%, n = 64, VAS 0–39 mm) and high-pain group (24%, n = 20, VAS 40–100 mm). Sex- and age-matched controls were randomly selected from the general population. Participants were asked to complete questionnaires regarding self-reported pain, HRQoL, fatigue, anxiety and depression. Medical assessments also were recorded. Result Fatigue score in the high-pain group (median, 36.5; interquartile range (IQR), 32.5–39.7) was significantly higher (p < 0.001) compared to the low-pain group (median, 23; IQR, 14.6–34.1), as well as scores for anxiety (median, 9; IQR, 6.5–11.5) and depression (median, 7.5; IQR, 5.5–9) (p < 0.001). The high-pain group had significantly lower scores compared to the low-pain group in all dimensions in the SF-36 (p ≤ 0.001–0.007). No statistical differences were detected between the low-pain group and controls in any measurement except for the dimensions physical function, general health, vitality and social function in SF-36. Conclusion Patients with SLE scoring higher degrees of pain were burdened with more fatigue, anxiety and depression and lower levels of HRQoL compared to patients with lower levels of pain who did not differ significantly from the general population in most dimensions. These results elucidate the importance of identifying patients with higher degrees of pain who are probably in need of more extensive multidimensional interventions to decrease symptom burden.

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.

Fear-avoidance beliefs about physical activity in adults with rheumatoid arthritis

Objectives: The aim of this study was to describe fear-avoidance beliefs about physical activity and explore how these beliefs correlate with sociodemographic, disease-specific, and psychosocial factors in adults with rheumatoid arthritis (RA). Method: This cross-sectional study is part of the Physical Activity in Rheumatoid Arthritis (PARA) 2010 study. The study participants (n = 2351) were identified through the Swedish Rheumatology Quality (SRQ) registries from six rheumatology clinics in Sweden. Univariate and backwards stepwise logistic regressions were performed. Results: Stepwise logistic regressions showed that male gender [odds ratio (OR) 1.55, 95% confidence interval (CI) 1.26–1.91] and having a below average income (OR 1.35, 95% CI 1.12–1.63) were associated with an increased risk of high scores on the modified Fear Avoidance-Belief Questionnaire (mFABQ). The two disease-specific factors most indicative of high mFABQ scores were high level of pain (OR 1.99, 95% CI 1.40–2.84) and poor health (OR 1.59, 95% CI 1.10–2.29). With regard to psychosocial factors, low health-related quality of life (HRQoL; OR 0.44, 95% CI 0.35–0.55) and a low score on the Exercise Self-Efficacy Scale (ESES; OR 0.66, 95% CI 0.52–0.82) were significantly associated with a high mFABQ score. The model fit was 0.27 (Nagelkerke’s R2). Conclusions: High fear-avoidance beliefs about physical activity in patients with RA were found to be associated with being male and having a below average income, a high level of pain, poor health, a low HRQoL, and low ESES score. Additional research is warranted for adults with RA to capture the multiple potential correlates to fear-avoidance beliefs about physical activity.

Determination of the minimal clinically important difference for seven measures of fatigue in Swedish patients with systemic lupus erythematosus

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.

Ro/SSA autoantibody-positive pregnancy: reactions to serial fetal Doppler echocardiographic surveillance

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.

A comparison of patients’ and physicians’ assessments of disease activity using the Swedish version of the Systemic Lupus Activity Questionnaire

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.

Anti-Ro/SSA autoantibody-positive women's experience of information given on the risk of congenital heart block.

Objective 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. Methods 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). Results 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. Conclusions 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.

AB1248-HPR Work Ability in Patients with Polymyositis and Dermatomyositis: An Explorative and Descriptive Study

Background Polymyositis (PM) and dermatomyositis (DM) are characterized by muscle weakness which affects activity and participation. Work and leisure are the activities patients with PM/DM perceive as most limited. Previous studies addressing work in terms of how many are employed and degree of sick-leave. No study has investigated the self-rated work ability or how the work environment affects the ability to work in these patients. 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 polymyositis (PM) and dermatomyositis (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. Disclosure of Interest None declared

FRI0623-HPR Body Awareness in Persons Diagnosed with Rheumatoid Arthritis

Background Living with rheumatoid arthritis (RA) poses physiological (1) and psychological demands on a person (2). RA is a autoimmune disease that can cause pain, disability, and suffering (1). The ability to notice bodily inner sensations and stimuli (body awareness, BA) is described in the literature in ways that could have either a positive or a negative impact on a persons health. The concept of BA is complex (3) and a thorough understanding is needed about what BA means from the patients perspective. A phenomenological study (4) can complement purely medical and psychological perspectives with a holistic understanding. Objectives The objective of this study was to gain a deeper understanding from the patients perspective about the phenomenon of BA. Methods Eighteen narrative interviews (the interviews lasting on average about 75 minutes) were conducted with patients aged 23-78 years, 2 males and 16 females with RA. Disease duration was from 6-34 years. The interviews were analyzed using the Empirical Phenomenological Psychological method (4). Results General characteristics were found running through all the 18 interviews having to do with the fact that the disease had given rise to a higher degree of negatively toned BA. BA was a reactive process of searching or controlling after disease-related symptoms, or a reactive process that was triggered by emotions. BA was an active process of taking an inventory of abilities. Finally, all participants had the ability to shift focus from BA to the outside world. We found four typologies: “A reactive process on symptoms”, “A reactive process on emotional triggers”, “An active process of taking an inventory of abilities” and “A shifting from BA to the outside world”. Conclusions BA can be both positively and negatively toned. Hence, health care workers must be able to understand when BA is positive and when it is negative from the patients perspective. RA resulted in a higher degree of negatively toned BA. Therefore, the ability to shift attention from BA to activity in the outside world could sometimes be beneficial for the patients health. References Symmons, D.P. (2002). Epidemiology of rheumatoid arthritis: determinants of onset, persistence and outcome. Best Practice & Research. Clinical Rheumatology, 16, 707-722. Lutze, U., & Archenholtz, B. (2007). The impact of arthritis on daily living with the patient perspective in focus. Scandinavian Journal of Caring Science, 21, 64-70. Mehling, W.E., Gopisetty, V., Daubenmier, J., Price. C.J., Hecht. F.M., & Stewart. A. (2009). Body Awareness: Construct and Self-Report Measures. PLoS ONE, 19. [Adobe Digital Editions version]. DOI: 10.1371/journal.pone.0005614. Karlsson, G. (1993). Psychological Qualitative Research from a Phenomenological Perspective. Stockholm: Almqvist & Wiksell. Acknowledgements We would like to thank all the patients who participated in the individual interviews. Disclosure of Interest None declared