Elizabeth D. Hale

Predictors of fatigue over 1 year among people with rheumatoid arthritis

Fatigue is a systemic feeling of exhaustion that is a common symptom of many chronic illnesses, including the autoimmune inflammatory disease rheumatoid arthritis (RA). We examined predictors of levels of fatigue among people with RA using Leventhals Common-Sense Model (CSM), which states that cognitive representations of an illness spur (or halt) peoples efforts to cope and thereby influence outcomes of the illness. Our use of the CSM was designed in the light of evidence in the literature specific to fatigue in RA. Current fatigue was reported on a 100 mm visual analogue scale (with anchors “No fatigue” and “Unbearable fatigue”) by 114 people (73.7% women) with RA at baseline and 1 year later. Baseline employment status, pain, impact of disability, sleep disruption frequency, depressed mood, perceptions of consequences, arthritis self-efficacy and attempts to cope by praying/hoping were also self-reported. Duration of RA and a haematological measure of systemic inflammation (erythrocyte sedimentation rate; ESR) were obtained from hospital records. Unexpectedly, RA duration did not predict fatigue after 1 year, although lower baseline inflammation did (controlling for baseline fatigue and other disease impact variables). This may be due to sampling flares of RA at baseline. Baseline perceptions that RA has severe consequences and is uncontrollable also predicted greater fatigue after 1 year but this relationship was not mediated by praying/hoping. Targeted psychological care to modify perceptions of severe consequences may therefore improve later fatigue for people with RA even when the condition is longstanding, but the mechanisms of any benefit require further investigation.

Perceived Barriers, Facilitators and Benefits for Regular Physical Activity and Exercise in Patients with Rheumatoid Arthritis: A Review of the Literature

Rheumatoid arthritis (RA) is an autoimmune disease, which not only affects the joints but can also impact on general well-being and risk for cardiovascular disease. Regular physical activity and exercise in patients with RA have numerous health benefits. Nevertheless, the majority of patients with RA are physically inactive. This indicates that people with RA might experience additional or more severe barriers to physical activity or exercise than the general population. This narrative review provides an overview of perceived barriers, benefits and facilitators of physical activity and exercise in RA. Databases were searched for articles published until September 2014 using the terms ‘rheumatoid arthritis’, ‘physical activity’, ‘exercise’, ‘barriers’, ‘facilitators’, ‘benefits’, ‘motivation’, ‘motivators’ and ‘enablers’. Similarities were found between disease-specific barriers and benefits of physical activity and exercise, e.g. pain and fatigue are frequently mentioned as barriers, but reductions in pain and fatigue are perceived benefits of physical activity and exercise. Even though exercise does not influence the existence of barriers, physically active patients appear to be more capable of overcoming them. Therefore, exercise programmes should enhance self-efficacy for exercise in order to achieve long-term physical activity and exercise behaviour. Encouragement from health professionals and friends/family are facilitators for physical activity and exercise. There is a need for interventions that support RA patients in overcoming barriers to physical activity and exercise and help sustain this important health behaviour.

‘Concealing the Evidence’: The Importance of Appearance Concerns for Patients with Systemic Lupus Erythematosus

Outwardly visible signs associated with systemic lupus erythematosus (SLE) can include facial rashes, alopecia and weight gain. We sought to understand the concerns of SLE patients about their appearance and the recognition of this by healthcare professionals. Semi-structured interviews were carried out with 10 women aged 26-68 years diagnosed with SLE for one to 12 years. Data were analysed with Interpretative Phenomenological Analysis (IPA); this seeks to describe and provide understanding of people’s experience of a phenomenon by studying in-depth a small number from a relatively homogeneous group (women with SLE in the present study). Analysis revealed three themes concerning appearance issues. Participants described public self-consciousness after the onset of SLE. Cosmetics and clothing were used skilfully to appear ‘normal’, hide the ‘self’ and assert control but could increase feelings of difference and isolation. Self-imposed isolation was also described and may relate to depression. The understanding of family, friends, colleagues and healthcare providers was also important. Awareness of the psychosocial concerns of SLE patients with life-changing skin disease may enable multidisciplinary healthcare teams to offer a more sensitive, practical service. The physical and emotional needs of SLE patients need to be ascertained and appropriate educational and psychological services are required.

A randomized controlled trial of a cognitive behavioural patient education intervention vs a traditional information leaflet to address the cardiovascular aspects of rheumatoid disease

OBJECTIVES Cardiovascular disease (CVD) is responsible for 50% of the excess mortality for patients with RA. This study aimed to evaluate a novel 8-week cognitive behavioural patient education intervention designed to effect behavioural change with regard to modifiable CVD risk factors in people with RA. METHODS This was a non-blinded randomized controlled trial with a delayed intervention arm. Participants were randomly assigned to receive the cognitive behavioural education intervention or a control information leaflet at a ratio of 1:1. The primary outcome measure was patients knowledge of CVD in RA; secondary measures were psychological measures relating to effecting behaviour change, actual behaviour changes and clinical risk factors. Data were collected at baseline, 2 and 6 months. RESULTS A total of 110 participants consented (52 in the intervention group and 58 in the control group) to participate in the study. At 6 months, those in the intervention group had significantly higher knowledge scores (P < 0.001); improved behavioural intentions to increase exercise (P < 0.001), eat a low-fat diet (P = 0.01) and lose weight (P = 0.06); and lower mean diastolic blood pressure by 3.7 mmHg, whereas the control groups mean diastolic blood pressure increased by 0.8 mmHg. There was no difference between the groups on actual behaviours. CONCLUSIONS Patient education has a significant role to play in CVD risk factor modification for patients with RA, and the detailed development of this programme probably contributed to its successful results. It is disappointing that behaviours, as we measured them, did not change. The challenge, as always, is how to translate behavioural intentions into action. Larger studies, powered specifically to look at behavioural changes, are required. Trial registration. National Institute for Health Research, UKCRN 4566.

Translating patient education theory into practice: Developing material to address the cardiovascular education needs of people with rheumatoid arthritis

Objective This paper describes the rationale and design of a theory-informed patient education programme addressing cardiovascular disease for people with rheumatoid arthritis (RA) to illustrate how theory can explicitly be translated into practice. Methods A steering group of rheumatologists and psychologists was convened to design the programme. The Common Sense Model, the Theory of Planned Behaviour and the Stages of Change Model were used to underpin the topics and activities in the programme. User involvement was sought. The programme was formatted into a manual and the reading age of the materials was calculated. Results A small group 8-week programme was designed. The structure of the patient education programme, including topics, underlying psychological theory as well as behaviour change techniques, is described. Conclusion This patient education programme addresses a currently unmet educational need for patients with RA and uses theory to design, not just evaluate, the programme. This will allow both enhanced interpretation of the results when the programme is implemented and replication by other units if successful. Practice implications The actual design and detail of education programmes merit wider dissemination to facilitate progress in the process of development and application.

Cutaneous abnormalities in rheumatoid arthritis compared with non-inflammatory rheumatic conditions

Background: Cutaneous abnormalities are common in rheumatoid arthritis, but exact prevalence estimates are yet to be established. Some abnormalities may be independent and coincidental, whereas others may relate to rheumatoid arthritis or its treatment. Objectives: To determine the exact nature and point prevalence of cutaneous abnormalities in patients with rheumatoid arthritis compared with those in patients with non-inflammatory rheumatic disease. Methods: 349 consecutive outpatients for rheumatology (205 with rheumatoid arthritis and 144 with non-inflammatory rheumatic conditions) were examined for skin and nail signs by a dermatologist. Histories of rheumatology, dermatology, drugs and allergy were noted in detail. Results: Skin abnormalities were reported by more patients with rheumatoid arthritis (61%) than non-inflammatory controls (47%). More patients with rheumatoid arthritis (39%) than controls (10%) attributed their skin abnormality to drugs. Cutaneous abnormalities observed by the dermatologist were also more common in patients with rheumatoid arthritis (76%) than in the group with non-inflammatory disease (60%). Specifically, bruising, athlete’s foot, scars, rheumatoid nodules and vasculitic lesions were more common in patients with rheumatoid arthritis than in controls. The presence of bruising was predicted only by current steroid use. The presence of any other specific cutaneous abnormalities was not predicted by any of the variables assessed. In the whole group, current steroid use and having rheumatoid arthritis were the only important predictors of having any cutaneous abnormality. Conclusions: Self-reported and observed cutaneous abnormalities are more common in patients with rheumatoid arthritis than in controls with non-inflammatory disease. These include cutaneous abnormalities related to side effects of drugs or to rheumatoid arthritis itself and other abnormalities previously believed to be independent but which may be of clinical importance.

Meeting the needs of children who have parents with chronic inflammatory musculoskeletal diseases

Chronic inflammatory musculoskeletal diseases, such as RA, SLE and AS, affect millions of people worldwide, many of whom either are of parenting age or will already be parents at the time of disease onset. Living with a chronic illness involves adapting to a physically changing body while re-negotiating established roles (e.g. mother or father). Evidence-based information delivered at appropriate times during the course of illness is important to help such individuals cope with these changes. Moreover, a parent’s rheumatic disease may have a major effect on the children (defined here as <18 years of age) and the family unit. Although we, and others, have examined the effects on adult patients in the family context [1, 2], no one has adequately established the effect from the children’s perspective, nor is there any information or education resources to help children cope with their parent’s illness. The type of information and format that would be useful to these children remain unknown, and many related research questions (such as the amount and degree of care that children and young people provide to patients and families) remain unanswered. In studies about health-care experiences of women with SLE, it was apparent that the effect of the disease on the family unit was a major concern [3–5]. Children had to adapt to the fluctuating nature of the parent’s disease and tolerate being cared for by people outside the immediate family unit. They also took care of themselves, their mothers and other family members. Patients felt that no educational resources or support were available to help them have a discussion with their children, particularly as a family, about what the children understood and their concerns; hence, these matters remained unresolved [4]. Health-care providers did not seem to communicate about these issues, mainly because the patients interacted with many different professionals and did not feel they knew any one person well enough to discuss their psychosocial concerns [5]. Children, particularly those of school age, are often effectively excluded from health-care interactions between mothers, their partners and health-care providers, and may be uncertain about how to raise questions. The availability of educational materials would enable parents to facilitate family-based discussions. The timing of these discussions can be judged appropriately only by the individual family, as both the willingness to receive information about a parents’ illness and the ability to cope with it will vary from child to child. Within other disease groups (e.g. breast cancer), some information is available [6]. However, informing children about a parent’s diagnosis of a severe or chronic illness, or both, is mostly left to parents who are unprepared and unsupported [7]. Parents may overor underestimate their children’s ability to understand about their illness and may believe the children to be more sophisticated in their understanding than they actually are. During the school-age years, children expand their understanding of specific illnesses, but their knowledge may be made up of both real and imaginary features, and they could attribute parental illness to their own actions [8]. It may be more appropriate to have specific individual counselling available, which raises questions about who provides such a service and what training would be necessary to support this. Children who have a parent with a chronic illness may experience several serious consequences. For instance, a study explored the experiences and needs of such children living with a parent having mental health problems (e.g. depression) and found that children provided both emotional support and physical care for the parent [9], worried about the parent in the short and long term, were frightened to ask for help for themselves and were afraid to disclose the nature of their care responsibilities outside the family unit. These anxieties played a key factor in children’s inability to concentrate and their subsequent performance at school. People with chronic inflammatory rheumatic disease commonly experience feelings of depression and anxiety, thus the children may experience their parent with a low mood, as well as an intrusive chronic, fluctuating illness [10, 11]. In the UK, the Standards of Care for People with Inflammatory Arthritis and Connective Tissue Diseases developed by the Arthritis and Musculoskeletal Alliance (ARMA) suggest that at diagnosis, patients should have a full assessment that includes their psychosocial needs and families and carers should be involved in this process [12]. Ideally, patients should receive a tailored plan of care that provides information and education for both the patient and their carers. Although this process does not specifically address the needs of the children within the family unit, we argue that it should do so, as the quality of life within a family unit is inevitably a multidirectional process. In the UK, children are increasingly encouraged to form partnerships with their health-care providers to facilitate informed decision making. As children who are deemed