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Rheumatology Advance Access originally published online on August 22, 2007
Rheumatology 2007 46(10):1513-1516; doi:10.1093/rheumatology/kem176
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© The Author 2007. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

EDITORIALS

Patient education on cardiovascular aspects of rheumatoid disease: an unmet need

H. John1, E. D. Hale1, G. J. Treharne1,2 and G. D. Kitas1,2,3

1Department of Rheumatology, Dudley Group of Hospitals NHS Trust, 2School of Psychology, University of Birmingham and 3Research Institute in Healthcare Science, University of Wolverhampton, UK.

Correspondence to: Dr Holly John, Dudley Group of Hospitals NHS Trust, Russells Hall Hospital, Pensnett Road, Dudley DY1 2HQ, UK. E-mail: Holly.John{at}dgoh.nhs.uk

Rheumatoid arthritis (RA) is the most common form of inflammatory arthritis affecting nearly one in 100 adults [1]. Cardiovascular disease (CVD) occurs at rates higher than expected in the general population, is the most prevalent comorbidity and most common cause of death in RA patients [2–5]. The exact reasons remain unclear, but both classical CVD risk factors (such as hypertension and dyslipidaemia) and novel mechanisms (such as systemic inflammation), and their interplay, appear to be important [6, 7]. Classical risk factors may be fixed (e.g. age, sex, family history) or modifiable (e.g. smoking, hypertension, dyslipidaemia, obesity, sedentarity). The latter are an obvious target for identification and intervention [7, 8], neither of which appears to be happening systematically in the current rheumatology health care environment [3, 9]. This is partly due to lack of sufficient awareness of health professionals and information/education of patients on this aspect of their disease. Interestingly, many of the medications used for the management of RA may have a significant impact upon these factors, with the clearest example being the potential cardiovascular effects of the commonly used non-steroidal anti-inflammatory drugs (NSAIDs) and coxibs [10], the hypertensive effects of some disease-modifying anti-rheumatic drugs (DMARDs) such as cyclosporine and leflunomide, or potential beneficial lipid effects of others, such as hydroxychloroquine [7]. Non-pharmacological interventions are of equal, if not more, importance: for example, there is excellent quality evidence to suggest that exercise provides significant functional benefits in RA patients, together, of course, with important cardiovascular benefits, such as improvements in lipid profile and insulin sensitivity, reduction of prothrombotic states and body fat content, and diminished risk of death from CVD in the general population and high risk groups therein [11]. The importance of systemic inflammation is more controversial: there is clear evidence that atherosclerosis is an inflammatory disease [12] and that RA appears to associate with premature peripheral atherosclerotic changes [13]; there is also evidence that better control of systemic inflammation leads to survival benefits in RA [14–17]. However, it remains unclear whether this is a direct effect or whether it operates through amelioration of the multiple metabolic and vascular effects of inflammation [18, 19]. Uncertainties also remain as to the best way to achieve sufficient control of high-grade inflammation without adverse effects to the vasculature.

Within the general population it is possible to estimate an individual's likelihood to sustain an acute CVD event in the next 10 years, using validated risk algorithms based on the presence and severity of classical CVD risk factors [20]. On the basis of this, informed decisions can be taken, as to whether this individual would be suitable for primary prevention therapy, according to existing accepted guidelines [20]. Communicating future risk and the need for therapy to prevent it (as opposed to the need for treatment to control symptoms or problems that a patient is already experiencing) is one of the most challenging education/communication tasks in the patient/health professional interaction [21]. Despite such difficulties, patient education has been placed right at the heart of prevention strategies in cardiovascular medicine, and has been shown to be effective. Important examples include the PREMIER trial, where behavioural interventions improved multiple lifestyle factors and resulted in significant improvements of blood pressure control [22]. Further, studies in high-risk groups with diabetes and (for secondary prevention) in patients with confirmed previous cardiovascular events have shown that increased knowledge of CVD risk factors correlated with improved adherence to medication, successful and sustained lifestyle modification, and improvement in individual CVD risk factors [23, 24]. More importantly, participation in education programmes has been shown to result to improved clinical outcomes, including statistically significant reduction in 10-year CVD risk [25] as well as actual CVD events in the long term (8-year follow-up) [26].

Research in the cardiovascular aspects of rheumatic disease is increasingly being translated into clinical practice. Management of cardiovascular risk is becoming an integral component of the long term care of patients with RA. Every day practice indicates, and British Society for Rheumatology (BSR) guidelines state, that controlling comorbidities such as ischaemic heart disease (IHD), hypertension and dyslipidaemia are already important aspects of rheumatology care provision [27]. This has been operationalized in the ‘Arthritis and Musculoskeletal Alliance’ (ARMA) standards of care for patients with inflammatory arthritis in the inclusion of an updated cardiovascular health check in the annual specialist review appointments [28]. A recent Arthritis Research Campaign (arc) report also states that all patients with RA should be screened annually for CVD risk factors [29]. However, a patient survey of the ARMA standards in 2006 by the National Rheumatoid Arthritis Society (NRAS) has revealed that monitoring of cardiovascular health was infrequent [30]. Even with increasing awareness amongst health professionals about CVD risk identification and management in RA, effective implementation of such an important and ambitious change of practice requires appropriate and timely education of the patients themselves, in order to achieve concordance. Concordance, the informed interaction in the decision-making process in the patient–professional partnership, promotes shared responsibility for care [31] and is particularly important for lifestyle modification interventions and for prevention therapy. A survey of more than 2000 patients with diabetes in 2002 revealed that two thirds of respondents did not consider CVD a serious complication of diabetes, suggesting that their education on, and communication of, CVD risk had been inadequate [32]. Such shortcomings are likely to be more pronounced in RA patients, where research evidence has only recently started to reach the medical, let alone the patient, communities. Indeed, previous work in our unit has shown that only a quarter of patients with RA and confirmed CVD recorded the latter as a comorbidity when listing their other illnesses [33]. Therefore, a combination of research findings, management imperatives, observations and experience from other conditions and from RA, as well as common sense, place patient education on the cardiovascular aspects of rheumatoid disease right at the centre of any successful prevention strategy.

In general, patient education is defined as ‘any set of planned educational activities designed to improve patients’ health behaviours and/or health status’ [34] and has a vital role to play, particularly in the management of chronic disease. Its main purpose is to facilitate desired health outcomes [35], which can be achieved by increasing self-efficacy, decreasing helplessness and thus increasing the ability to make health-related decisions [36]. Written information (such as the multiple arc-funded leaflets), when used to complement verbal information, has been shown to improve patient satisfaction [37] and disease knowledge [38]. However, it has been suggested that knowledge alone, whilst it may be a prerequisite, is rarely sufficient for behaviour change [39–41]. Social cognition theory, developed by Bandura [42], examines the different factors that contribute to behaviour change. Several models have been developed, including the Theory of Planned Behaviour, developed by Ajzen and colleagues: this proposes that behaviours are a result of a persons attitude towards a behaviour (both beliefs and evaluation of the outcome, which may be affected by gaining knowledge), but social norms and perceived behavioural control (self-efficacy) are also very important [43]. Thus educational interventions developed to include knowledge, behavioural and psychosocial components have been found to be the most effective in behaviour modification [39]. In patients with RA, such cognitive-behavioural educational interventions addressing articular symptoms have shown improvement in knowledge, self-efficacy to cope with chronic arthritis [44], exercise and joint protection, disability and pain [45]. A systematic review of RA patient education analysed the effectiveness of different types of educational intervention, namely information only, counselling or behavioural treatments [46]. Only studies involving behavioural interventions showed significant effects (improving outcomes for functional disability, patient global assessment and depression) but this was limited to immediately after the intervention. Perhaps the best known example of such a multifaceted education programme is the Arthritis Self-Management Programme (ASMP), pioneered by Lorig in the late 70s in the USA [47] and successfully run in Australia [48] and Europe [49] for many years. In the UK, the ASMP is delivered through Arthritis Care under the name Challenging Arthritis [50], and significant improvements in self-efficacy, health behaviours and health status have been shown [51]. A generic chronic disease self-management programme (CDSMP) is also established. In patients with heart disease, lung disease, stroke or arthritis, participation in the CDSMP reduced hospital visits and health distress and improved self-efficacy [52].

However, the systematic review of rheumatoid arthritis patient education mentioned earlier failed to show long-term benefit from patient education interventions [46]. This may be because many of the existing interventions failed to explore the patient's previous level of knowledge (which may be low), or the patient's own model of illness and its management. More specifically, the interventions may not have assessed the patient's needs beforehand (we have found through work in the Birmingham Arthritis Resource Centre (BARC) that, despite the ever-increasing availability of both educational material and format, formal ‘needs assessments’ continue to identify unmet needs [53]) or the intervention may have failed to explore the divergence of opinions between healthcare professionals and patients regarding the importance of various aspects of disease or management [41, 54]. For example, we have previously shown that, compared to health professionals, patients are more interested in information pertaining to medication side effects, diet and alternative treatments [53]. This suggests that the quality of the analysis prior to designing an educational intervention will determine its subsequent effectiveness [55]. Specifically in relation to CVD risk, research has also shown that patients’ recall of blood test results may be susceptible to self-enhancement bias, wherein people with high cholesterol recall a lower figure [56]: this may explain the lack of change in health behaviours even after personally relevant risk information. Overall, these observations would suggest that educational material and interventions are more likely to be successful if they are developed specifically for the purpose and evaluated for their effectiveness prior to application.

Patients’ preferences for educational interventions are also important to consider, as this is central to their design. Qualitative research in RA patients has shown they found a one-to-one format helpful for learning about very specific information such as medications, whereas a group format was better for learning about self-management techniques and exercise due to the motivation factor a small group can offer [57]. This will be particularly pertinent if one wants to promote lifestyle changes for cardiovascular benefit. Leaflets were viewed as helpful and a useful memory aid, but insufficient alone to address the breadth of concerns there may be, e.g. surrounding the value and safety of exercise [57]. A comparison of group education with supporting self-help guide vs supporting self-help guide alone showed improvement in self-efficacy in the former group, whereas no changes from baseline were observed in the latter group, or, interestingly, in those participating in the group education session with their partner [58]. Conversely, questionnaire research has shown the preferred format for learning about arthritis was in writing [59].

There has been a small pilot study in Glasgow of 22 RA patients who also attended a nurse-led clinic to address CVD lifestyle factors with modest (but promising) benefit as a result [60]. Other than that, to the best of our knowledge, no educational interventions have been developed and evaluated for communicating the increased CVD risk and relevant requirements for pharmacological prevention therapy and lifestyle modification to people with RA. Our anecdotal, but significant, experience from the first combined rheumatology/cardiology clinic in the UK that has been running in Dudley for the last 3 years, is that there is a thirst and need for such material, which has to be developed specifically for the purpose. The approaches used in the general population or other high-risk groups, e.g. diabetics, may not be sufficient for people with RA, because they present several additional challenges. Some of these challenges relate to the healthcare community, for example the lack of consensus about the exact magnitude of additional CVD risk conferred by having RA, because this cannot yet be accurately calculated (as it can be for other conditions, such as diabetes or hypertension). Other challenges are of more personal nature. The RA patient presents with disabling joint symptoms yet rheumatologists also discuss cardiovascular disease, which may seem to the patient unrelated, unimportant if it is currently asymptomatic or even overwhelming as we ‘break bad news’ twice about both RA and CVD. Potential adverse cardiovascular effects of medications needed for sufficient relief of RA symptoms, the possible need for even further medications on an already significant background of polypharmacy [61] and the potential drug interactions need to be outlined and put in perspective. Lifestyle changes, e.g. exercise, may seem daunting in the presence of significant joint discomfort. There are currently no ‘off the shelf’ resources to address sufficiently this specific need.

In summary, patient-focused education on the cardiovascular aspects of rheumatoid disease is a very important yet neglected area of current RA patient education programmes. There is an urgent requirement to address this unmet need and develop properly designed and evaluated educational interventions, which will specifically address the complex lifestyle and pharmacological measures required to optimise the cardiovascular health of every person with RA. It is likely that a combination of appropriate written information with a psycho-educational behavioural approach will be the most effective means for this. Such programmes could be delivered through already existing infrastructure, for example the excellent network of rheumatology clinical nurse specialists [62], possibly with initial help by health psychologists [63], where available. It is now up to us, the wider rheumatology clinical and scientific community, to rise to this challenge.

The authors have declared no conflicts of interest.

Acknowledgements

HJ is supported by an Arthritis Research Campaign Educational Research Fellowship (number: 17883). We would like to thank the anonymous reviewers of the grant application as well as the Committee for their constructive and helpful comments.

The Dudley Group of Hospitals NHS Trust Department of Rheumatology is in receipt of an infrastructure support grant from the Arthritis Research Campaign (number: 17682).

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Accepted 26 April 2007


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