H. Repping-Wuts

Fatigue in patients with rheumatoid arthritis: what is known and what is needed

Fatigue is, just like pain, a subjective symptom which may occur in patients with many different diseases and thereby also in patients with RA. In the literature, a consensus definition for fatigue is not presented. However, most authors define fatigue as: ‘an overwhelming, sustained sense of exhaustion and decreased capacity for physical and mental work’ [1]. For chronic fatigue, Piper’s definition is widely used in international studies and is as follows: ‘chronic fatigue is perceived as unpleasant, unusual, abnormal or excessive whole-body tiredness, disproportionate to or unrelated to activity or exertion and present for more than one month. Chronic fatigue is constant or recurrent, it is not dispelled easily by sleep or rest and it can have a profound negative impact on the person’s quality of life’ [2]. To distinguish between chronic fatigue and the chronic fatigue syndrome (CFS), the Centre for Disease Control and Prevention (CDC) has formulated special criteria for CFS [3]. In published studies, fatigue is mostly described as a multicausal, multidimensional and complex concept in which psychological, biochemical and physiological mechanisms play a role. As with pain, the definition is not the most important issue in clinical practice but the way fatigue can and should be assessed is, because quantifying fatigue enables us to study fatigue.

High level of distress in long-term survivors of thyroid carcinoma: Results of rapid screening using the distress thermometer

Abstract Context. Cancer patients are at increased risk for distress. The Distress Thermometer (DT) and problem list (PL) are short-tools validated and recommended for distress screening in cancer patients. Objective. To investigate the level of distress and problems experienced by survivors of differentiated non-medullary thyroid carcinoma (DTC), using the DT and PL and whether this correlates with clinical and demographical variables. Participants, design and setting. All 205 DTC patients, under follow-up at the outpatient clinic of our university hospital, were asked to fill in the DT and PL, hospital anxiety and depression scale (HADS), illness cognition questionnaire (ICQ) and an ad hoc questionnaire. Receiver Operator Characteristic analysis (ROC) was used to establish the optimal DT cut-off score according to HADS. Correlations of questionnaires scores with data on diagnosis, treatment and follow-up collected from medical records were analyzed. Results. Of the 159 respondents, 145 agreed to participate [118 in remission, median follow-up 7.2 years (range 3 months–41 years)]. Of these, 34.3% rated their distress score ≥5, indicating clinically relevant distress according to ROC analysis. Patients reported physical (86%) over emotional problems (76%) as sources of distress. DT scores correlated with HADS scores and ICQ subscales. No significant correlations were found between DT scores and clinical or demographical characteristics except for employment status. Conclusion. Prevalence of distress is high among patients with DTC even after long-term remission and cannot be predicted by clinical and demographical characteristics. DT and PL are useful screening instruments for distress in DTC patients and could easily be incorporated into daily practice.

Patients’ needs and expectations with regard to rheumatology nursing care: results of multicentre focus group interviews

Objective The contribution of rheumatology nurses to improved patient outcomes is increasingly recognised but more research is needed about the effects of interventions. The patients role in deciding about healthcare quality is considered pivotal and therefore patients’ opinions and expectations should be directional in defining priorities for a research agenda. The objective of this study was to explore needs and expectations with regard to rheumatology nursing care in patients with chronic inflammatory arthritis (CIA). Methods Patients aged 18–90 years from three medical clinics in different regions in The Netherlands were invited to participate in focus group interviews. The interviews were transcribed verbatim and independently analysed by the authors. In a consensus meeting the emerging subjects were categorised into themes which were verified in a fourth interview. Results In total, 20 patients, mean age 57 years old, participated in the focus group interviews. The majority had rheumatoid arthritis and mean disease duration was 15 years. The focus group interviews revealed 12 subthemes that were organised into four main themes: education, self-management support, emotional support and well organised care. Additionally, patients considered opinions about ‘the personality of the nurse’ (eg, easy to talk to) to be important. Conclusions Patients with CIA mentioned that many problems have to be addressed when one is faced with having a rheumatic disease. The focus group interviews yielded valuable information about the care these patients need and expect. This information will direct future research with regard to rheumatology nursing care.

Rheumatologists’ knowledge, attitude and current management of fatigue in patients with rheumatoid arthritis (RA)

To describe rheumatologists’ knowledge, attitude and current management of fatigue in patients with rheumatoid arthritis (RA), a postal questionnaire was sent to all rheumatologists (N = 204) and trainees (N = 49), members of the Dutch Society of Rheumatology. The overall response rate was 44% (N = 110). In general, rheumatologists’ knowledge about RA-related fatigue was in accordance with the literature but they perceive a lack of their own knowledge about aetiology and evidence-based interventions to prevent and treat fatigue. The majority of the rheumatologists believe that fatigue is a multi-disciplinary diagnosis and is preferably managed by the nurse specialist (34%). Assuming that the patient will raise the issue, most of the rheumatologists pay attention to fatigue during the first consultation and less often during follow-up consultations. There is a need for knowledge about causes and treatments for RA-related fatigue to ensure that patient outcomes are improved.

Fatigue in patients with rheumatoid arthritis: British and Dutch nurses' knowledge, attitudes and management.

AIM This paper is a report of a study conducted to compare the knowledge, attitudes and current management of rheumatoid arthritis-related fatigue in British and Dutch rheumatology nurses. BACKGROUND After pain, fatigue is the most important symptom for patients with rheumatoid arthritis, but little is known about the current management of this fatigue by healthcare professionals. METHODS A questionnaire was mailed in 2007 to rheumatology nurses who were members of British Health Professionals in Rheumatology (N = 267) and the Dutch Society of Rheumatology Nurses (N = 227). Descriptive statistics, independent samples t-test and Pearson chi-square tests were used for statistical analysis. RESULTS A total of 494 nurses returned questionnaires (response rate 48%). In general, their knowledge about rheumatoid arthritis fatigue was in accordance with the literature and all indicated a positive attitude towards assessing and managing rheumatoid arthritis-related fatigue. However, respondents reported contradictory views about managing fatigue. Although they believed that other team members could help patients, they seldom referred patients on to other professionals. Although nurses believed that other advice besides pacing and balance between activity and rest might help, they did not offer this to patients. Despite acknowledging that there is poor communication about fatigue between patients and nurses, respondents reported that it is patients rather than nurses who raise the issue of fatigue in consultations. CONCLUSION British and Dutch rheumatology nurses are sympathetic but do not know how to manage rheumatoid arthritis-related fatigue. Strategies to support self-management for this fatigue, and to increase communication between healthcare professionals and patients, should be initiated to help improve patient outcomes for rheumatoid arthritis-related fatigue.

The effect of anti-TNF-α vs. DMARDs on fatigue in rheumatoid arthritis patients

Objectives: Fatigue is experienced frequently by patients with rheumatoid arthritis (RA). Fatigue may be caused by high levels of pain and disease activity in RA but can remain present while disease activity is moderate to low. It is not clear whether RA patients receiving anti-tumour necrosis factor (TNF) treatment reach lower levels of acute fatigue than RA patients receiving disease-modifying anti-rheumatic drug (DMARD) treatment. The aim of our study was to analyse whether, in patients with RA, the effect of anti-TNF on fatigue is greater than the effect of DMARD treatment. Method: Sixty-seven RA patients receiving anti-TNF treatment and 104 RA patients receiving DMARDs were included. All patients were on stable treatment for at least 6 months prior to baseline measurement. Fatigue was measured monthly over 1 year with the fatigue severity subscale of the Checklist Individual Strength (CIS-fatigue). The association between persistent severe fatigue and medication group was analysed using multiple linear regression including confounders. Results: In the anti-TNF group the mean (SD) level of persistent fatigue was significantly higher than in the DMARD group [32.2 (11.4) vs. 28.3 (10.9), p = 0.025] and more patients experienced persistent severe (CIS-fatigue score ≥ 35) fatigue (42% and 27% respectively, p = 0.043). However, when correcting for age, disease activity, haemoglobin, treatment duration, pain, physical disability, and clinical depression, medication type seemed to influence neither the mean level of persistent fatigue (p = 0.251) nor the percentage of patients with persistent severe fatigue (p = 0.745). Conclusions: When taking into account probable confounders including disease activity, medication type did not influence persistent fatigue in RA patients. It seems that, besides its anti-inflammatory effect, anti-TNF has no complementary effect on persistent fatigue.

An Online Tailored Self-Management Program for Patients With Rheumatoid Arthritis: A Developmental Study

Background Every day rheumatoid arthritis (RA) patients make many decisions about managing their disease. An online, computer-tailored, self-management program can support this decision making, but development of such a program requires the active participation of patients. Objective To develop an online, computer-tailored, self-management program integrated with the nursing care, as nurses have an important role in supporting self-management behavior. Methods The intervention mapping framework was used to develop the program. Development was a multistep process: (1) needs assessment; (2) developing program and change objectives in a matrix; (3) selecting theory-based intervention methods and practical application strategies; (4) producing program components; (5) planning and adoption, implementation, and sustainability; and (6) planning for evaluation. Results After conducting the needs assessment (step 1), nine health-related problems were identified: (1) balancing rest and activity, (2) setting boundaries, (3) asking for help and support, (4) use of medicines, (5) communicating with health professionals, (6) use of assistive devices, (7) performing physical exercises, (8) coping with worries, and (9) coping with RA. After defining performance and change objectives (step 2), we identified a number of methods which could be used to achieve them (step 3), such as provision of general information about health-related behavior, self-monitoring of behavior, persuasive communication, modeling, and self-persuasion and tailoring. We described and operationalized these methods in texts, videos, exercises, and a medication intake schedule. The resulting program (step 4) consisted of an introduction module and nine modules dealing with health-related problems. The content of these modules is tailored to the user’s self-efficacy, and patients can use the online program as often as they want, working through a module or modules at their own speed. After implementation (step 5), the program will be evaluated in a two-center pilot trial involving 200 RA patients. Log-in data and qualitative interviews will used for a process evaluation. Conclusions The intervention mapping framework was used to guide development of an online computer-tailored self-management program via a process which could serve as a model for the development of other interventions. A pilot randomized controlled trial (RCT) will provide insight into the important outcome measures in preparation for a larger RCT. The process evaluation will provide insight into how RA patients use the program and the attrition rate. Trial Registration Netherlands Trial Register (NTR): NTR4871; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4871 [accessed 13-NOV-15] http://www.webcitation.org/6d1ZyIoEy

SAT0052 Comparison of Physical Activity and Level of Fatigue Among Patients with Rheumatoid Arthritis and the General Dutch Population

Background Besides pain, patients with rheumatoid arthritis (RA) mention fatigue as the most important complaint. Many RA patients experience fatigue, which may be caused by their disease. However, many people in the general population are also fatigued; it is unclear whether fatigue indeed is more severe in RA patients than in the general population. Fatigue may be related to the level of physical activity (PA); while RA patients may be less physically active compared to the general population, it is useful to estimate the size of the “gap”. Objectives 1) to compare the level of PA and the level of fatigue between RA patients and the general Dutch population and 2) to investigate the relation between the level of PA and fatigue in both groups. Methods Data representative of the general Dutch population were obtained as part of the Nijmegen Biomedical Study (NBS) in 2012, a population-based survey among randomly selected inhabitants of the municipality of Nijmegen (n=3764). 740 RA patients across the Netherlands filled in an online survey in 2013 and 2014. Self-reported PA was assessed using the Short Questionnaire to Assess Health (SQUASH) Enhancing PA. This Dutch questionnaire contains questions about PA divided over four categories. Total amount of PA in minutes per week was calculated. Fatigue was assessed using the Dutch ‘Shortened fatigue questionnaire’ (SFQ), whereby a higher score indicates a more severe level of fatigue. Results RA patients on average had 1642±1167 (Mean ± SD) minutes of PA per week which was lower (p<0.001) than the general population with 2079±1364 (Mean ± SD) minutes per week, also in all four categories of activities (p<0.05). In comparison with the general Dutch population, RA patients had a higher fatigue level (p<0.001), with median (IQR) SFQ scores of 9 (6-15) and 16 (11-22) respectively. Corrected for gender, age and BMI, partial correlation established a significant negative relationship between fatigue as independent variable and PA as dependent variable in RA patients (r=-0.174, p<0.001) as well as in the general Dutch population (r=-0.074, p<0.001). Table 1. Physical activity RA patients General Dutch population P-value n=740 n=3764 Anthropometric  Age, years, mean ± SD 55.9±11.5 52.1±15.2 0.000*  Female, number (%) 409 (55) 2025 (54) 0.488  Body mass index, kg/m2, mean ± SD 26.2±4.7 25.0±3.9 0.000* Physical activity in min/week  Total physical activity 1475 (711–2428) 1980 (960–3000) 0.000*  Commuting activities 0 (0–5) 0 (0–90) 0.000*  Activities at school or work 0 (0–1200) 0 (0–1460) 0.020*  Household activities 360 (44–840) 480 (180–960) 0.000*  Leisure time activities 330 (171–593) 440 (180–788) 0.000* Values are median plus interquartile ranges unless stated otherwise.* Significant at P≤0.05. Conclusions In comparison with the general Dutch population, RA patients showed higher levels of fatigue and were less physically active; less PA was associated with a higher level of fatigue, and this association was more than twice as strong in RA patients compared with the general Dutch population. Disclosure of Interest None declared

THU0263 Factors Associated with Fatigue in Patients with Rheumatoid Arthritis: A Multidimensional “Path Analysis” Model

Background Fatigue is one of the most commonly reported symptoms in rheumatoid arthritis (RA) and severe fatigue also occurs in patients with low disease activity. Many factors may play a role in causing fatigue in RA. Several cross-sectional and longitudinal studies showed that psychosocial factors such as self-efficacy and coping strategies, pain and limitations in daily functioning, rather than inflammation, are related to fatigue severity in RA (1-4). These factors could have a possible causal relationship with fatigue. Objectives To develop and test a multidimensional model of factors that determine fatigue severity (CIS-fatigue) in RA using “path analysis”, with the aim to facilitate the development of a treatment strategy for RA fatigue. Methods A cross-sectional study (n=228) of consecutively included patients with RA was performed. Patient and disease characteristics, fatigue level, personality factors and psychosocial variables were collected (fig 1). Structural equation modeling (“path analysis”) was used to test a hypothesized model for fatigue. The hypothesized model of fatigue included latent variables of pain, physical functioning, mood, sense of control, sleep disturbances and fatigue. Figure 1. The final model with standardized correlation coefficients. *p<0.01. Results The final model included 4 latent variables and had a moderate fit (CFI=0.943) (figure 1). According to the model a higher pain level (β=0.16, p=0.274) and lower physical functioning (β=-0.61, p=0.002) leads to a higher fatigue level. In addition, more mood disturbance is related to a higher fatigue level (β=0.253, p=0.003) and a worse sense of control is related to more mood disturbance (β= -0.58, p≤0.001). The final model including pain, mood and physical functioning explained 72% of the variance of fatigue in RA. Conclusions According to the multidimensional model, RA fatigue is influenced by pain, sense of control, mood and physical functioning. Treatment of these four factors by psychological interventions and an exercise program could help to improve fatigue in patients with RA. Randomized controlled trials, are needed to test the efficacy of these interventions. References Hewlett S, Chalder T, Choy E, Cramp F, Davis B, Dures E, et al. Fatigue in rheumatoid arthritis: time for a conceptual model. Rheumatology (Oxford). 2011;50(6):1004-6. Epub 2010/09/08. van Hoogmoed D, Fransen J, Bleijenberg G, van Riel P. Physical and psychosocial correlates of severe fatigue in rheumatoid arthritis. Rheumatology (Oxford). 2010;49(7):1294-302. Epub 2010/04/01. Treharne GJ, Lyons AC, Hale ED, Goodchild CE, Booth DA, Kitas GD. Predictors of fatigue over 1 year among people with rheumatoid arthritis. Psychol Health Med. 2008;13(4):494-504. Epub 2008/10/01. Mancuso CA, Rincon M, Sayles W, Paget SA. Psychosocial variables and fatigue: a longitudinal study comparing individuals with rheumatoid arthritis and healthy controls. J Rheumatol. 2006;33(8):1496-502. Epub 2006/06/20. Disclosure of Interest : None declared DOI 10.1136/annrheumdis-2014-eular.1637

THU0578 The Patient’s View on Rheumatology Nursing Care: Results of a Survey

Background In order to minimise differences in rheumatology nursing care across countries and regions, recommendations for the role of the nurse have been developed (1). However, patients should be directional in defining the content of good quality care. Therefore, their expectations and needs were explored in focus groups. 4 main themes were categorised: education, self-management support, emotional support and well-organised care. Objectives The objective of the present study was to explore 1) the importance of the themes among a larger group of patients 2) patient satisfaction with the care that is provided and 3) patients’ preferences for methods of care delivery. Methods Dutch patients were invited to participate in a web-based survey. The survey presented topics for each theme. Patients had to select the most appropriate answer. For each topic, patients had to select 1 out of 5 categories for importance (not at all/somewhat no/somewhat yes/very/do not know). Regarding education, patients also had to give their satisfaction, by whom they would like to receive care and by what method. Results In total 475 patients, with systemic inflammatory diseases such as RA (76%), and other disorders such as OA (24%), filled in the questionnaires. Mean age was 56 years, mean disease duration was 13 years, and 72% were female. The topics of most importance are presented in the table. Conclusions The survey yielded valuable information about the importance of topics for education, self-management support, emotional support and care organisation but also about patients’ opinions about care delivery. The results can support monitoring of the quality of care from a patient’s perspective. References van Eijk-Hustings Y, van Tubergen A et al. EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis. Ann Rheum Dis. 2012;71 (13-19). Acknowledgements We would like to thank our patient research partners for their valuable contribution to this study. Disclosure of Interest None Declared