Rheumatoid arthritis (RA) is a chronic systemic inflammatory disease characterised by the presence of a destructive polyarthritis with major impact on several areas of the patient's life. Despite the huge variety of effective pharmacological treatments currently available, any improvement in the health and quality of life of the patient may depend on their ability and willingness to meet with all treatments prescribed and to carry out self-care activities.1,2 As a result, education is an essential element of treatment, which allows patients to care for themselves, complete everyday activities and take essential decisions from a health-wise viewpoint. If the patient does not receive this information from qualified staff they will try to find it from other sources, with the consequent possibility of it being erroneous and/or incomplete. This in turn can lead to negative reactions, making the treatment process more complex. Education provides many advantages both in clinical terms and socially, and helps the patient to face up to their health problems. It also has a positive influence on the recovery process. For this reason, it is considered an integral part of high quality medical care.3,4

It has been recommended that education focuses on the patient and is adapted to satisfy the need for individual knowledge,5 because it has been proven that non directed education does not provide long-term effects in patients with RA.1,6,7 For this, it would be useful for doctors to have a tool to assess patients’ perception of educational needs. The Educational Needs Assessment Tool (ENAT)8 is a self-completion questionnaire which was originally designed in United Kingdom and subsequently validated in several European countries (Spain, Portugal, Germany, Poland, the Low Countries, Finland, Norway and Sweden), leading to the Spanish SpENAT version. It consists of 39 questions grouped into 7 domains: Pain management (6 questions), Movement (5 questions), Feelings (4 questions), Arthritic process (7 questions), Treatments (7 questions), Self-help measures (6 questions) and Support systems (4 questions). Response are based on a Likert type 5-point scale of: “not important at all”, “slightly important”, “quite important”, “very important” and “extremely important”.1

Up until now educational needs (ENs) in Argentina of patients with RA have not been systematically assessed. For this reason, the purpose of this study was to assess the ENs on the disease in patients with RU using the SpENAT questionnaire, and to determine what the main sources of information consulted by these patients are.

A multicentre, observational, analytical, cross-sectional study was conducted. We included consecutive patients≥18 years with a diagnosis of RA (ACR 87 and/or ACR-EULAR 20109,10). Other associated collagenopathies (except Sjögren's syndrome) were excluded, as was any difficulty by the patient in reading and understanding the questionnaire. Demographic data, educational level (quantified by years of education), disease characteristics and clinimetric properties (number of painful and swollen joints, visual analogue scale for pain, overall disease assessment by the patient and the physician, disease activity measured by the DAS28 and functional capacity measured through the HAQ-A) were recorded. All patients completed the SpENAT (we obtained the authors’ authorisation for its use) and were asked about the sources they had used to obtain information on their disease.

We included 496 patients from 20 centres in Spain. The percentage of women was 89.5% and mean age was 52.2 years (SD 12.7). Clinical characteristics, laboratory data and treatment data are contained in Table 1.

Analysis of the responses obtained in the SpENAT questionnaire revealed that there were higher ENs in domains Movement, Feelings andArthritic process (Table 2). The women had higher ENs than the men in these same domains (P=.0023, P=.0041 and P=.0437, respectively). Patients who were aged ≥40 had higher ENs in the Treatments domain (P=.0345), and in those with over 7 years of education the highest ENs were in the domains Arthritic process (P=.0407) and Self-help measures (P=.0176). Greater functional impairment (HAQ≥.87) was associated with higher ENs in all domains in a statistically significant manner.

Patients with high levels of disease activity (DAS28>5.1) showed higher ENs than those in remission in the domains Pain management (P=.0115), Movement (P=.0448), Feelings (p=.0355), Treatments (P=.0360) and Support systems (P=.0230), and those patients with low disease activity on domains Self-help measures (P=.0175) and Support systems (P=.0075). Patients with moderate activity showed higher ENs in the Pain management domain compared with patients in remission (P=.0036).

No differences were observed in the ENs between early RA (defined by time of evolution under 2years) and established RA, between patients with or without biologics treatment.

All the SpENAT domains showed positive correlations to one another (P<.0001), with the most important being Pain management/Movement and Treatments/Arthritic process (r≥.7).

Regarding information sources which patients regularly consult (Fig. 1), the most frequently consulted was the rheumatologist (93.95%), and those who used Internet were on average younger (P=.0004).

Fig. 1.

Sources consulted by patient with rheumatoid arthritis (n=488).

(0.09MB).

RA affects .2%–1% of the Caucasian population and it has been estimated that in Argentina there are approximately 400,000 people who suffer from the disease.11

RA is therefore a major problem in Argentina and must be dealt with by both medical teams and by patients. This is a disease which without proper treatment leads to physical, emotional and social limitations. Diagnosis of RA may arouse different feelings, such as impotence, negation, fear and depression, affecting the quality of life of these patients. As with all chronic disease, education is an essential element of treatment since it improves comprehension, increases adherence to treatment and helps to put self-help strategies into practice. Knowledge is a tool that allows the patient to confront their health problems, heighten self-care, boost decision making and help them cope with the consequences of their disease.12

In several studies standardised education was observed to have limited long-term effects, and the concept of an education focused on the ENs of the patient was introduced, which was also called “effective education”. For a tailored education it is essential to determine which aspects of RA are of interest to each individual in particular. Although up until recently no tools were available to systematically assess the ENs in patients with RA, in 2011 the cross-cultural validation of the ENAT was performed in 7 European countries, leading to the SpENAT and providing the only objective and valid tool in Spanish to date.1

Recently Ndosi et al. studied the effects of education based on patient needs. This was a multicentre, single blind study which compared self-efficacy, knowledge and health status in 2 groups of patients with RA who were educated with and without ENAT application. Although no significant differences were found between the groups regarding knowledge, they did observe that the patients who were informed according to their interests improved in self-sufficiency and health aspects, such as pain, stiffness, sleep, social interaction and psychological status. Moreover, the ENAT domain scores were lower at the end of the study, demonstrating a reduction in ENs.13

Our study was the first to use SpENAT in Argentina and therefore the first to assess the ENs of patients with RA in our country. According to the results obtained, the patients with RA have a greater interest in receiving information about Movement, Feelings andArthritic process. The Movement domain refers to joint protection measures, such as the use of objects which make daily life activities easier, the administration of strength, periods of joint activity and rest, and ways of preventing deformity. Also, in the Feelings section emphasis was placed on stress, mood changes, asthenia and the causes of the feelings of sadness or depression which may accompany disease evolution. Lastly, the Arthritic process encompasses: cause, type of arthritis, genetic transmission, forms of treatment, quality of life, functional limitation and evolution. That stated above proves that the patient with RA requires a holistic approach, with participation from the rheumatologist being essential, together with that of other health specialists such occupational therapists, kinesiology and mental health.

Consistent with findings from European studies,1,12 our study found there were significant differences in the ENs depending on the sex and level of education, with them being higher for women and for people with a higher educational level.

It is outstanding that patients with a higher functional impairment and high level of disease activity had greater ENs, but no significant differences were found between early and established RA, demonstrating that it is not duration but level of disability and disease activity which determines interest in finding out more about the disease.

Although it was observed that the rheumatologist was the primary source of information for patients with RA, report bias cannot be ignored, since administration of the questionnaire was made in the rheumatology unit.

Another possible limitation to the study was the fact that patients’ knowledge prior to the administration of the SpENAT was not measured, since this knowledge could alter individual ENs.

One strength of this study was that several centres throughout Argentina, including regions with major social, economic and cultural differences were able to participate in it. This inter-regional diversity afforded the study a highly representative study population for Argentina.

RA patients were greatly interested in knowing more about their disease. The ENs were highest in the domains Movement, Arthritic process and Feelings. Major functional impairment was associated with greater ENs. Patients with high disease activity presented higher ENs in almost all domains. Those with a higher educational level have more ENs in the domains of Arthritic process and Self-help measures. The rheumatologist was the principal source of information for the RA patient.

This was the first study to assess ENs or RA patients in Argentina.

We believe that the results obtained emphasise the need for effective education from multidisciplinary teams to offer optimal treatment and increase adherence to treatment in patients suffering form RA, thereby improving their long-term prognosis.

The authors have no conflict of interests to declare.