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.

The man-in-the-moon face: a qualitative study of body image, self-image and medication use in systemic lupus erythematosus.

OBJECTIVE: Little is yet known about the interactions between body image, self-image, medication use and adherence to medication in people with SLE. Using a qualitative mode of enquiry, we sought to understand these experiences within a group of patients diagnosed with SLE. METHODS: Fifteen participants (14 female, 1 male) with SLE took part in semi-structured interviews. Their ages ranged from 22 to 57 years and disease duration ranged from 3 to 20 years. Interviews were audio recorded and transcribed verbatim. Data were analysed using interpretative phenomenological analysis. RESULTS: Analysis revealed four themes that are presented set within the overarching concept of body and self-image: the road to diagnosis, communication and treatment concordance, living with the medication and self-image-faking it. Narratives revealed significant dissatisfaction with body image, an externally located concept. Worries about appearance and weight were most commonly mentioned and were often related to steroid use. Creative non-compliance with medication was frequently described and greater concordant relationships with physicians desired. Overall, participants sought increased investment in self-image, an internally located concept. CONCLUSION: Body and self-image are important issues for individuals with SLE. Yet participants in our study generally felt that their health care providers did not give enough consideration to their concerns over the outward appearance effects of both the disease and its treatment.

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 patient's 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 group's 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.

Patient evaluation of a novel patient education leaflet about heart disease risk among people with rheumatoid arthritis.

OBJECTIVES: People with rheumatoid arthritis (RA) require access to clear and consistent information about their condition, and Arthritis Research UK produces a wide range of leaflets to meet this need. There is no patient information leaflet about cardiovascular disease (CVD) in the context of having RA, despite the fact that CVD accounts for 50% of the mortality in RA. A leaflet was developed; this paper describes the patient evaluation of this novel education resource. METHODS: A questionnaire was developed to evaluate the leaflet's content, literacy, graphics, layout and ability to stimulate learning. It was distributed, with the leaflet, to 500 National Rheumatoid Arthritis Society members. RESULTS: There was a 72.8% response rate. Of the respondents: 96% agreed that the purpose of the leaflet was clear; 78% agreed that the leaflet was relevant to them; 96% agreed that they understood the leaflet; 53% agreed that the leaflet cover was appealing; 81% agreed that the size of the typing was suitable; 71% agreed that the advice was appropriate for their lifestyle. Omissions included adequately describing any risks associated with its advice, what sources of information were used to compile the leaflet and when this information was produced. Eighty-four per cent of respondents said that they would recommend this leaflet to other people with RA. Qualitatively, many people felt more empowered as a result of reading the leaflet. CONCLUSIONS: Patient evaluation of new educational resources is important and ensures that materials meet patients' needs and are presented in a user-friendly style. Ultimately, the test of the effectiveness of the leaflet will be if patients change their behaviour appropriately.

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.

'Extra information a bit further down the line': rheumatoid arthritis patients' perceptions of developing educational material about the cardiovascular disease risk.

OBJECTIVE: There are no patient education programmes addressing the increased risk of cardiovascular disease (CVD) associated with rheumatoid arthritis (RA). This is the second in a pair of studies exploring stakeholder perceptions of developing such educational material. Healthcare professionals' perceptions were explored in the first study; here, we explore the perceptions of people with RA. METHODS: Semi-structured interviews were held individually with 18 people with RA, purposively sampled to include participants with no co-morbid history of CVD, those with CVD risk factors and those who had experienced a CVD event. The interview transcripts were analysed using interpretative phenomenological analysis. RESULTS: Four superordinate themes were identified: experiences of living with RA; reactions to learning about co-morbid CVD; implementing lifestyle changes; and expectations of education. Participants found being diagnosed with RA a devastating experience and were mostly unaware of their increased risk of CVD co-morbidity. They explained how information about CVD would be overwhelming and irrelevant at diagnosis, but they would have coped with 'extra information a bit further down the line'. CONCLUSION: There is a need to develop educational material or programmes. Their design must consider factors which facilitate lifestyle change, such as motivation or receiving personalized advice, and factors that inhibit change, such as depression or fatalism. Emphasizing the positive effects that some CVD lifestyle changes may have on RA symptom control may be particularly persuasive. Group education would be a popular format. These findings can be directly translated into clinical practice.

'All singing from the same hymn sheet': healthcare professionals' perceptions of developing patient education material about the cardiovascular aspects of rheumatoid arthritis.

OBJECTIVE: Cardiovascular disease (CVD) is the leading cause of death in Britain, and its prevention is a priority. Rheumatoid arthritis (RA) patients have an increased risk of CVD, and management of modifiable classical risk factors requires a programme with patient education at its heart. Before a programme for RA patients is implemented, it is important to explore the perceptions of patients and relevant healthcare professionals and consider how these could influence the subsequent content, timing and delivery of such education. Here, we assess healthcare professionals' perceptions. METHODS: Qualitative focus group methodology was adopted. Four group meetings of healthcare professionals were held using a semi-structured interview schedule. The focus group transcripts were analysed using interpretative phenomenological analysis. RESULTS: Three superordinate themes emerged: professional determinations about people with RA, including their perceptions about patients' priorities and motivations; communication about CVD risk, including what should be communicated, how, to whom and when; and responsibility for CVD management, referring to patients and the healthcare community. CONCLUSIONS: Although healthcare professionals agree that it is important to convey the increased CVD risk to patients with RA, there is concern they may be less proactive in promoting risk management strategies. There was uncertainty about the best time to discuss CVD with RA patients. Maintaining a close relationship between primary and secondary care was thought to be important, with all healthcare professionals 'singing from the same hymn sheet'. These findings can inform the development of novel education material to fulfil a currently unmet clinical need.

Development and initial validation of a heart disease knowledge questionnaire for people with rheumatoid arthritis.

OBJECTIVE: To develop and validate two parallel versions of the Heart Disease Fact Questionnaire-Rheumatoid Arthritis (HDFQ-RA), a modified and RA-specific version of the HDFQ. METHODS: The questionnaire was composed of generic questions from the original HDFQ with additional RA-specific questions added. Cognitive interviewing was performed and the questionnaire piloted to generate two parallel questionnaires. For psychometric validation, 130 patients with RA completed the questionnaires at baseline and 2 weeks later. RESULTS: Parallel form reliability of both questionnaires was established; the median score for both questionnaires was 9/13 with no statistical difference in scores. Kuder-Richardson-20 formula was 0.65 and 0.67 for both questionnaires. Test-retest stability showed constant median scores of 9/13 and no statistical difference in scores between baseline and follow-up. Known groups comparison revealed that patients who had self-educated themselves about heart disease, or who were taking CVD medications, had significantly higher scores on the questionnaires. CONCLUSION: The two parallel forms of the HDFQ-RA have been shown to be equivalent measures of CVD knowledge and evidence supporting their reliability and validity is presented. PRACTICE IMPLICATIONS: The HDFQ-RA is an appropriate tool for application in clinical and research settings, e.g., assessing novel educational interventions or tracking participants' progress on an education course.

Qualitative methodologies II: a brief guide to applying interpretative phenomenological analysis in musculoskeletal care.

In this paper, we conclude our two-part series discussing how readers of Musculoskeletal Care might employ qualitative methods. In the first paper of the series, we focused upon some issues surrounding the distinctions and similarities between qualitative and quantitative approaches, and outlined the origins, typology and limitations of qualitative methods. We introduced one particular qualitative research process which readers may find useful: interpretative phenomenological analysis (IPA). In this paper, we provide a guide to applying IPA via the design of an interview, a methodology with which it is particularly suited. We discuss some specific interview and interviewing processes and also some necessary ethical issues, including personal protection and participant well-being. We also discuss how to proceed through analysis while considering questions about the generalizability, reliability, validity and application of results. Finally, we question the overall direction of qualitative research, which we hope will fuel debate among readers.

The health and life experiences of mothers with rheumatoid arthritis: a phenomenological study.

BACKGROUND: In our varied roles as health care professionals and researchers, many women with rheumatoid arthritis (RA) have commented to us about their feelings of inability to cope with everyday tasks, especially within their role as mothers. AIMS: This study explored the health and life experiences of mothers with RA in order to increase knowledge about this group of women and inform health care professionals who provide them with support before and after becoming a mother. METHODS: A phenomenological approach was adopted, and individual face-to-face semi-structured interviews were carried out with a sample of seven women, aged 21-41 years, who had lived with RA for 3-11 years and had one or more children under five years of age (total range of ages being 1-7 years). The data were analysed using Colaizzi's procedural steps. RESULTS: The five major themes that emerged were inner strength, depression, labelling, failure, and pre- and post-natal education. Sub-themes included issues such as putting on a brave face, spirituality, guilt, burden, feeling 'robbed of motherhood', isolation, coping methods and lack of information. CONCLUSIONS: This in-depth study informs health care professionals for their role as support provider for mothers with RA. Further research needs to be carried out to include multicultural experiences, which may or may not differ. As a step forward, we have implemented a local support group for mothers with RA, which will hopefully add benefit to existing rheumatology, midwifery and health visiting services.

Qualitative methodologies I: asking research questions with reflexive insight.

The purpose of this paper, the first of a series of two discussion pieces, is to introduce some of the issues in the debate surrounding qualitative research to the readers of Musculoskeletal Care. Recent issues of the Journal have seen an informative focus on quantitative methods and statistical analysis, and here we provide an equivalent introduction to semi-structured interviewing and qualitative analysis in this series. In the qualitative tradition, we have tried to keep our discussion reflexive, transparent and contextualized within the history of the approach and the theoretical considerations that underlie it, including the origins, nature, methods and limits of the approach. We provide information that we hope is useful for readers with all levels of familiarity with qualitative research, building from an introduction to some basic assumptions and ethical issues. We also introduce one specific qualitative approach, interpretative phenomenological analysis, which researchers might wish to apply. In the accompanying paper in a subsequent issue of Musculoskeletal Care, we will describe the potential application of this approach.