After reading this chapter you should be able to:
• Define patient education.
• Underpin practice with appropriate theoretical models.
• Describe the role of the nurse in patient education.
• Select suitable topics and methods of delivering patient education.
• Compile written information sheets.
• Discuss interventions that enhance adherence to medication regimes.
• Assess the effectiveness of a patient education programme.
It may not be immediately obvious why a book about drug therapy should contain a substantial section on patient education. Drug therapy plays a major role in the management of many rheumatic diseases, but therapeutic benefit is achieved only if the patient actually takes the prescribed drugs. Non-adherence, also known as non-compliance, is a common problem associated with a variety of factors, one of which is lack of knowledge. Amongst its other attributes, patient education addresses this knowledge deficit and enables patients to make informed decisions about their management. A partnership approach to decision making between the practitioner and the patient not only empowers the patient, it also encourages them to adhere to their medication regime as they are in part responsible for the choice of treatment.
The term patient education has been used for many years, but the process that we know as patient education is not static and has evolved over time. These changes have inevitably led to alterations in the definition of patient education. Pre-1970s definitions concentrated on the transfer of information about the body and its workings from physician to the patient. However, it became apparent that the biomedical model of care, in which a person’s health is considered to be the responsibility of health professionals and the public health system, requiring little contribution from the individual patient, has little to offer those with chronic disease (Callahan and Pincus, 1997). This led to a change of emphasis during the 1970s
Drug Therapy in Rheumatology Nursing: Second Edition. Edited by Sarah Ryan. © 2007 John Wiley & Sons, Ltd.
and the focus on information transfer changed to that of ‘self care’ (Levin, 1986). As the process progressed definitions incorporated extended information transfer and promoted self-responsibility (Lindroth, Bauman and Daltroy, 1998).
In the United States the task force of the National Arthritis Advisory Board has developed a set of standards for arthritis patient education, which defines it as:
organized learning experiences designed to facilitate voluntary adoption of behaviours or belief conducive to health. It is a set of planned educational activities that are separate from clinical patient care. The activities of a patient education program must be designed to attain goals the patient has participated in formulating. The primary focus of these activities includes acquisition of information, skills, beliefs and attitudes which impact on health status, quality of life, and possibly healthcare utilization (Burckhardt, 1994).
Lorig (1996) has pointed out that modern definitions of patient education make no mention of improving knowledge. Activities aimed at improving knowledge are patient teaching and she thereby makes a distinction between this and patient education. However, in practice, teaching patients and increasing their knowledge of their disease and treatments is an integral part of an effective patient education programme.
Patient education has evolved into a complex process and it is suggested that the simplest working definition is a modified version of that stated by Lorig (1996): ‘any set of planned educational activities designed to improve the patient’s health behaviours and through this their health status and ultimately their long term outcome’ (Hill, 1997).
The mention of theories can deter many nurses, but theory can aid our practice by providing a very helpful insight as to why particular procedures work. A theory can be defined as a set of hypotheses related by logical argument to explain connected phenomena in general terms. Theories do not tell us what to do or how to do things but they can help to guide best practice. Models are based on theories and act as a skeletal framework on which to build. They have practical use as they provide a formal structure that serves as an aide-memoire, thus helping to ensure consistency ofpractice.
The most successful patient education programmes are those that are underpinned by a combination of theories and models (Lorig, 1996). The most difficult part is choosing that which is most appropriate for the client group!
A number of theories are relevant to patient education, in particular those that originate in the fields of:
• adult education;
Each has something to offer and perhaps the most successful programmes are those which incorporate something from each.
One of the underlying aims of patient education is to bring about health-enhancing behaviours and so theories and models that are grounded in behaviour change are particularly appropriate. Many experts working in the field of patient education advocate a working knowledge of the following:
• learned helplessness theory;
• stress and coping theory;
• health belief model;
• self-efficacy theory.
LEARNED HELPLESSNESS THEORY
Seligman (1975) developed the learned helplessness theory in 1975. His research with animals showed that those that received repeated electric shocks subsequently became helpless and unresponsive, however they reacted to them. This work was later adapted to human behaviour, and implies that believing that one has no control over one’s life leads to feelings of increased helplessness and depression. An example would be a patient who has rheumatoid arthritis for whom many of the slow acting anti-rheumatic drugs have produced severe side effects or have been non-efficacious. They begin to expect all subsequent drug therapy to fail and so do not feel it worth adhering to their treatment regimes. Repeated failure leads them to doubt their ability to control their disease and so they come to believe that their actions can have no effect on their eventual health status. This leads to a passive state leaving them unwilling or unable to make behavioural changes. Patients who enter this state of ‘learned helplessness’ show the characteristics of:
• lack of cognition;
• poor motivation;
STRESS AND COPING THEORY
One of the key elements of nursing is to help patients to cope with their illness (Wilson Barnett, 1984). This is particularly relevant when nursing patients with rheumatic diseases, as these are chronic, incurable, potentially disabling and lifealtering. It almost inevitable that these patients experience stress and coping deficits and so stress and coping theory is relevant to rheumatological patient education.
Lazarus and Folkman (1984) have described coping as ‘a set of cognitive and behavioural responses to events perceived as stressful’. Humans constantly change their cognition and behaviours to enable them to manage specific external and/or internal demands that they see as taxing or exceeding their resources. As new situations arise, their response changes, and coping strategies will only be employed if the person feels that the threat is a danger to them.
Each person perceives a given situation differently; what is a stressor or threat to one person may not worry his or her neighbour. This is evident when patients with RA are offered disease-modifying drugs and are told of the potential side effects. Some patients are keen to try them whatever the hazards, whilst others see the side effects as more problematic than their disease. The patient’s appraisal of what comprises a ‘stressor’ and their individual response to it is an important factor to be borne in mind when delivering a patient education programme. The educational activities must be relevant to the individual patient, or they will not be acted upon.
Executing Stress and Coping Theory
There is an abundance of literature on coping (Lazarus and Folkman, 1984; Newman, 1993, Newbold 1996). Lazarus and Falkman (1984) have identified eight discrete methods:
• seeking social support;
• accepting responsibility;
• problem solving;
• positive reappraisal.
These and others are discussed in more detail by Lorig (1996, pp. 208-111). Newbold (1996) suggests that patients tend to cope in two distinct ways, using problem-focused and emotion-focused coping strategies.
• Problem-focused coping strategies are based on the acquisition of knowledge about the stressor. This encourages the belief that the stressor can be controlled and its effect modified, avoided or minimized.
• Emotion-focused coping strategies are based on the elimination of any undesirable feelings which follow on from the experience of the stressor (Auerbach, 1989).
Coping strategies should be an inherent part of patient education programmes, but they need to be tailored to the individual concerned. Their effectiveness should be assessed and, if they are not shown to meet the patient’s needs, new strategies should be explored.
HEALTH BELIEF MODEL
This is one of the oldest and most widely used educational models, originally hypothesized by Becker (1974). It postulates that an individual’s behaviour is based on a combination of the perception of threat and the expectation of benefit.
Patients will only change their behaviour if they believe that:
• They are susceptible to threat and that the threat has severe consequences; or
• A new behaviour will be beneficial, they are capable of carrying out the behaviour change and the cost does not outweigh the benefits.
The respect, intimacy and reciprocity within the nurse-patient relationship enables the nurse to perceive the patient as a unique individual each with his or her own knowledge, belief values and experience. These three aspects must be incorporated into any system of care, including patient education programmes. People who have rheumatic diseases are usually adults whose own experience is one of their major resources and, in general, they do not accept advice unless it is justifiable and makes sense to them. It is therefore inappropriate to apply didactic learning and teaching models developed to pass knowledge from teacher to child; a more interactive patient-practitioner model is advocated as being the most successful when working with adults.
The patient’s perceptions are paramount and must be considered when choosing a model. This was highlighted in a study carried out in 1989 in which only 6 out of 32 patients adhered to the number of drugs prescribed by their GP. The other 26 compared their perceptions of the potential side effects and efficacy with their symptoms, and made their own judgement on the required dosage. The study recommended a shift of emphasis from didactic programmes to more informal methods of patient education (Donovan, Blake and Fleming, 1989).
Self-efficacy refers to a person’s confidence in their ability to perform a specific task or achieve a particular objective (Bandura, 1977). Self-efficacy is a dimension of the cognitive part of social learning theory. Social learning theory postulates that the interplay between physiological, social/physical environment and the individual’s cognition of their disease results in health-enhancing behaviours (Bandura, 1986).
Those people who exhibit a high degree of self-efficacy believe that what they do can make a positive difference. This is especially important in the context of patient education, as increases in self-efficacy are thought to bring about increases in appropriate health behaviours and health outcomes (Davis, Busch and Lowe, 1994; Lorig and Holman, 1993; Taal et al, 1993).
Patients who demonstrate a high degree of self-efficacy, when confronted with a stressor, are more likely to maintain a positive sense of well-being and so undertake constructive coping strategies. They are also more likely to be motivated and expend large amounts of effort on their task and persist with it. However, selfefficacy is behaviour-specific. For instance a patient may believe that they can control their pain, but have little expectation of controlling their sleep pattern. This is highlighted by Strecher et al. (1986) who points out that self-efficacy is not an independent personality characteristic; the individual’s expectation of efficacy will vary according to the task that confronts them. It is therefore inappropriate to characterize individuals as high or low exhibitors of self-efficacy. There is no such thing as an efficacious person!
It is important to understand the difference between a person’s outcome expectation and their self-efficacy expectation. Taal, Rasker and Wiegman (1996) describe them in the following manner:
• Outcome expectation refers to a person’s estimate that a recommended behaviour will have a beneficial effect.
• Self-efficacy expectation refers to beliefs in one’s ability to successfully execute the behaviour required to produce a desired outcome.
For instance, a patient with rheumatoid arthritis may believe that exercise will improve the outcome of their disease, but they may also have serious doubts about their ability to carry out the exercise. In this scenario, it is unlikely that the patient’s behaviour will change even though they believe that the exercise would help them.
It is crucial to emphasize that it is the individual’s perception of their self-efficacy skills rather than their actual capabilities that are important. Bandura (1986) has stated that ‘perceived self-efficacy is a significant determinant of human functioning that operates partially independently of underlying skills’.
Changes in self-efficacy can bring about changes in:
• cognitive-related states such as anxiety, depression and pain.
This makes it very relevant to patient education programmes designed for those with a rheumatic disease.
It is possible to improve a person’s expectation of their self-efficacy and four efficacy-enhancing mechanisms have been described by Bandura (1986). They are:
• mastery of skills;
• social persuasion;
• reinterpretation of physiological state.
MASTERY OF SKILLS
Mastery is successfully achieving proficiency in a skill, and successful mastery is a powerful tool with which to enhance self-efficacy. Failure undermines self-efficacy and so it is essential that the patients perceive skills as attainable. The attainment of new skills is best approached in a ‘one step at a time’ fashion. For instance, breaking a large task into smaller more manageable tasks, starting with those that the patient is confident of completing, helps to increase the patient’s expectations of self-efficacy. An example would be obese patients who want to lose weight but are afraid that they cannot stick to a weight-reducing diet. If they are confident that they can reduce the amount of sugar they take in their tea by half, this would be a reasonable starting point. Once they have successfully accomplished this task, then they can proceed, perhaps by reducing the amount of fat in their diet.
Making written contracts with themselves often encourages patients to make changes in their behaviour patterns (Lorig and Gonzalez, 1992). Although the health professional can gently guide the patient, the most successful contracting is essentially patient-driven.
Performance feedback is an important factor in attaining mastery (Bandura and Cervone, 1983). Positive feedback and suggested changes if poor progress is made can greatly improve skills. Patients are more likely to complete their contract when they are given this kind of encouragement. Feedback needs to be undertaken in a systematic manner and it is suggested that each session could begin with an update of progress.
Contracting and feedback are considered of such importance that Goeppinger and Lorig (1996) suggest that up to 30% of the time allotted to an educational programme should be spent on these subjects.
Patients often compare themselves with others who have the same disease. They make statements such as ‘I feel a fraud when I come to the clinic and see all those other patients whose disease is much worse than mine’. This trait can be used to positive advantage within the realms of patient education. Other patients, who have experienced similar problems and overcome them successfully by behavioural changes, can be used as role models. Modelling is particularly useful for group education and can be adapted for use in a number of different ways. For instance the Arthritis Self-Help Programme (Lorig et al., 1985) uses specially trained lay instructors who have some form of arthritis to lead groups, as it is believed that they exhibit a powerful and positive influence. Patients can also be asked to talk to classes and share their experience of their arthritis. Groups led by a health professional can ensure that the members of the class act as a support group and help each other. For example, discussing patient problems within the group allows individuals to contribute from their personal experience, thereby reinforcing the patients’ position as ‘experts’ and helping them towards a feeling of mastery. If the stated problem is new and has not been experienced by other group members, the health professional should offer guidance.
There are however a number of caveats with modelling:
• Do not choose a model that is dissimilar to the group. Goeppinger and Lorig (1996) suggest that the age, sex, ethnic origin and socioeconomic status of the group and the model should be closely matched.
• Do not choose models that exhibit spectacular achievements; this will only make others feel inadequate. It is better to choose someone to whom the group feels they can relate and that they can emulate.
Persuasion can have a strong influence on self-efficacy. It emanates from many different sources including arousal of fear, social influences and communication. Health professionals commonly use communication as a source of persuasion; gentle verbal persuasion often convinces patients that they are capable of improving their performance. Having reached their goals, patients may be urged to raise their sights and make further advances but it is important not to become overenthusiastic. Goal-setting should be realistic, as patients are more likely to be persuaded that they can reach their target if it is set just slightly higher than their present performance.
REINTERPRETATION OF PHYSIOLOGICAL STATE
People who have a rheumatic disease endure a number of physiological symptoms such as pain, stiffness and fatigue. Patients frequently interpret these symptoms as signs that they are managing their disease poorly and are therefore using ineffective coping mechanisms. This belief is compounded because some efficacious behaviour, such as undertaking an exercise regime, can cause the same symptoms; following exercise, the patient feels more pain, stiffness and fatigue. Patients need to ‘know their body’ so that they can differentiate between the symptoms of their disease and their reaction to their treatments. The nurse can play a major role in this area by identifying the patient’s beliefs and then helping them to reinterpret where necessary.
The principal purpose of patient education is to improve the patient’s health status and so ultimately their outcome. However, for some patients this aim is unobtainable, and in these cases preservation of the status quo or slowing of deterioration should be seen as a reasonable alternative.
Improvement in the health status of those with a chronic rheumatic disease is heterogeneous and complicated, making it unlikely that any single treatment will bring about maximal improvement in health status or outcome. For instance, successful DMARD therapy may improve the patient’s symptoms and physical well-being but will not replace any loss or reduction of range of motion or muscle bulk. The best outcome is achieved when treatments are combined and the patient self-manages their disease and patient education equips them to make the necessary changes to their behaviours and to adjust their attitudes. This can be difficult as disease activity can vary dramatically from day to day and so it is important that patients can tailor their therapies accordingly (Hill, 1995). To be effective patient education needs to address a variety of different situations. As well as being able to vary their drug usage according to their symptoms, patients must learn to:
• employ positive coping strategies;
• regulate their daily exercise programmes;
• plan their rest and activity periods.
Patient education is not a universal panacea. Although the majority of studies have shown that patient education can change behaviour and increase health status, the literature is not entirely consistent (Lorig, Konkol and Gonzalez, 1987). Even when behaviour changes occur they do not automatically lead to changes in health status, any more than increased knowledge automatically leads to changes in behaviours.
Patient education is an enhancer that magnifies the effects of other therapies. The ultimate success or failure in terms of health status and outcome is dependent upon the inherent effectiveness of the treatment employed (Hill, 1997). A patient may take a particular drug unfailingly, but if the drug is therapeutically ineffective, there will be no change in health status.
Effective self-management relies upon the patient’s willingness to cooperate and their ability to comply with self-care activities and so patient education is a combined effort between the multidisciplinary team, the patient and their partner/carer (Figure 4.1). However, not all patients are willing to self-manage even when they have undertaken a patient education programme.
Figure 4.1 The combined multidisciplinary team.
Patient education is one of the key elements of rheumatology nursing (Hill, 1995) and its importance is widely acknowledged (Hill, 2006). Although patient education is not an explicit part of the majority of conceptual or theoretical frameworks used by nurses, Vaughan (1991) suggests that it is implicitly intertwined with many nursing models. The ability to self-care as advocated by Orem (1980) could not be achieved without the sharing of information and belief in self-efficacy. Similarly, Roper, Logan and Tiernay’s (1985) ideas of maintaining independence cannot be achieved without the provision of patient education, and it is fundamental to Roy’s model of adapting to stresses (1976). Whichever model the nurse decides to use, patient education will be at the core of it.
PATIENT EDUCATION AND SOME FUNDAMENTAL ASPECTS
In whatever setting nurses find themselves, there are a number of underlying beliefs that underpin the care they provide. These are:
• nursing is a therapeutic activity;
• the nurse-patient relationship is reciprocal;
• the nurse-patient relationship is one of ‘professional closeness’.
PATIENT EDUCATION AND THERAPEUTIC NURSING
Therapeutic nursing can be described as those nursing activities that result in a movement towards health. McMahon (1991) provides a list of therapeutic activities that can be used as a framework for therapeutic nursing which includes patient teaching as one of its components (Table 4.1). Nurses using this therapeutic model when carrying out the wide-ranging role of administering, advising and monitoring the patient’s drug therapy are likely to provide a better outcome for their patients than those who do not.
Reciprocity is the act of mutual exchange and in the context of nursing reflects the belief that the nurse-patient relationship is beneficial to the nurse as well as the patient. Reciprocity is a key concept of nursing and an important aspect to encompass when engaged in the sphere of patient education. If we believe that
Table 4.1 Therapeutic activities in nursing (adapted from McMahon, 1991).
Developing the nurse/patient relationship:
Adapting the environment:
encouraging behavioural changes
fostering coping mechanisms
Tested physical treatments:
patients are the experts on how well or ill they feel, their perception and acceptance of pain levels and their knowledge of whether or not a therapy is therapeutic, then we must also acknowledge that we health professionals can learn from the experience of our patients. This reciprocal learning can enhance the process of patient education if both parties act as both teacher and learner throughout their encounters. The incorporation of the patient’s unique expertise into the nursing repertoire and the imparting of this knowledge to other patients will help to solve both current and future problems and develop understanding for future practice.
Peplau (1969) used the phrase ‘professional closeness’ over 30 years ago in an attempt to differentiate between the way in which peers learn together and the symbiotic learning that takes place in the nurse-patient relationship. Patients often describe their feelings about their relationship with their nurse by phrases such as ‘you are not just my nurse, I feel as though you are a friend’. These feelings stem from the empathy that the nurse exhibits, and this empathy is an important aspect of the educational process. Professional closeness allows the patient to feel safe and share their innermost emotions and fears. Many patients will ask questions of the nurse that they are reluctant to put to doctors; ‘Will this drug affect my sex life?’ or ‘Can it cause impotence?’ The skilled nurse can then help patients to learn about themselves and teach them how to deal with their problems. Professional closeness is an important aspect of care, but it can also become a burden to the less-experienced nurse. The imperative is to meet the needs of the patient and the close relationship that develops should not be mistaken for interpersonal closeness where the needs of professional and patient are mutual.
Although the emphasis of this book is drug therapy, it is inappropriate to concentrate on this one topic when considering a suitable programme of patient education. Indeed, the findings of Lee and Tan (1979), who studied drug adherence in 108 patients with rheumatoid arthritis, suggest that knowledge of the disease itself has more influence on adherence with drug therapy than knowledge of the medication. It is therefore necessary to contemplate the whole gamut of educational topics and try to bias them towards drug therapy. In addition to the educational content, you will also have to consider:
• the learning environment;
• demographic factors;
• the type of programme;
• teaching aids;
• the length and timing of the programme.
THE LEARNING ENVIRONMENT
The environment in which patient education takes place must be conducive to learning. It should therefore be:
• warm and well ventilated;
• well lit;
The more disabled patients may use wheelchairs or walking aids, and so easy access is essential. A mixture of seating should be available, as their partners or carers often accompany patients. Raised chairs and perching stools may also be necessary.
Patient education requires people to master new facts and ideas and this is difficult when there are physical distractions such as pain or joint stiffness. Patients in pain will have shortened attention spans so ensure that refreshment is close at hand in case they need to take any drugs whilst attending the session. Sessions longer than 45 minutes should include short breaks that allow patients to exercise, so reducing the risk of inactivity stiffness occurring.
Patients with rheumatic diseases are of all age groups, come from every social and cultural background and have all levels of educational ability. In fact often the only factor they have in common is that they have a rheumatic disease. When giving one- to-one patient education this is not a problem as the patient education programme can be tailored to the individual. However, if group teaching is anticipated, this lack of homogeneity inevitably raises the question of whether to segregate patients according to disease duration, age, diagnosis and educational ability.
Many people ask whether it is acceptable to teach newly diagnosed patients alongside those who have had their disease for many years. Those who have only recently been diagnosed are often confused about their illness and can be anxious and depressed. It can be counterproductive to sit them alongside someone who is clearly physically disfigured or whose psychological status is poor. Likewise, the patient with long disease duration may have taken many different drugs during their illness career, some of which may have been ineffective or caused side effects. Many patients are quick to relate any problems to their peer group! This would present an improper picture to a newly diagnosed patient and would surely exacerbate anxiety or depression. However, bear in mind that using other patients as role models can be a powerful stimulus and creates a very positive image of patient education. It’s all a question of balance and selection of a suitable role model.
The problem of mixing patients with widely differing disease duration has changed over the last few years as drug therapies such as the new biologics have vastly improved the outcome of patients (White and Bryer, 2006). The management of diseases such as rheumatoid arthritis has also changed dramatically, with DMARDs being introduced at a far earlier stage in the disease process, before physical joint damage has occurred. However, the best solution is to teach newly diagnosed patients in a separate group but to include within the team a patient who has had the disease for some time and is a good role model.
The pressure for group patient education sessions to be segregated according to age often comes from the younger age groups who see their problems as being very different from those of the middle-aged and elderly. They worry about their sexual image, marriage and family prospects and employment expectations, and many do not see these topics as being relevant to those older than they are. These fears are understandable and real and as far as is practicable need to be taken into account.
Teaching patient education programmes to patients with different types of arthritis is possible and works well in the form of the Arthritis Self Help Programme. There are however some topics which are easier to adapt than others. For instance, patients who have RA, osteoarthritis or AS can be taught the elements of pain control such as rest and the application of heat or ice in the same group. When discussing the types of drug therapy that affect pain, some such as analgesics, NSAIDs and intra-articular injections would also be suitable to all. However, DMARDs are not appropriate for those with osteoarthritis, and are of limited use in AS. Specific exercises are another area that can cause confusion. The vigorous exercises recommended for someone with AS are very different from those advocated for a person with RA and so teaching about this topic would be better segregated by diagnosis.
MIXED EDUCATIONAL ABILITY
Successful patient education requires patients to learn a lot about both arthritis and about themselves and some patients find this easier than others. There is substantial evidence of an association between higher levels of education and knowledge of arthritis (Hill et al., 1991; Kaplan and Kozin, 1981; Moll, 1986). Other research has shown that a lower level of formal education is one of the predictors of mortality over a five-year period (Fries et al., 1980; Pincus et al., 1989). It is possible to teach mixed ability classes and there are several techniques that will help:
• assess which participants will need additional help;
• persuade patients to set their own outcome agendas;
• check that participants understand what they have been told and ask them to reiterate;
• encourage those who have difficulty understanding to attend with a partner;
• teach memory aids to those who are forgetful.
THE TYPE OF PROGRAMME
There are a number of types of patient education programme and many have been shown to be successful. They can be delivered either informally, as is the case with opportunity education or more formally as group sessions; in fact many patients receive a mixture of both. The programmes can be taught by either health professionals or lay persons and the sessions can be given on an individual or group basis (Table 4.2). Each method has advantages and disadvantages and each patient will have his or her own preference. Whatever form the programme takes, it is important that the patients are provided with feedback about their performance, being careful to stress the most positive aspects first.
Table 4.2 Types of patient education programme.
Mode of delivery
Single health professional
Team of health professionals
Arthritis self management programme
Lay persons and health professionals
Patient education programmes need to be accessible to the patient. One of the easiest and most convenient routes is when the patient’s routine clinic consultation includes a patient education session as part of the normal management package. This is undertaken in some areas of the country and research has shown this approach is both practical and effective (Mahmud et al., 1995).
One-to-one teaching is perhaps the most common way in which specialist nurses deliver patient education regarding drug therapy. This often occurs when patients are referred to nurse-led clinics for monitoring of efficacy and side effects following changes to disease-modifying drugs. One of the most noteworthy aspects of one to one teaching is its flexibility. Although the programme will need to planned, it can be tailored to the specific patient and so include topics that are important to the individual. This method of delivery also allows patient education to proceed at the pace and order of topic dictated by the patient. Before the patient education programme can begin you should:
• explore the patients’ preferences about their drug therapy;
• assess their knowledge of drugs;
• establish shared goals;
• discuss any preferred method of information transfer.
PREFERENCES OF DRUG THERAPY
Before starting any drug treatment it is necessary to explore the patient’s perceptions and feelings about their drug therapy. Examine some of the practical implications:
Number of Drugs to be Taken
Some patients are happy to take any amount of drugs; others are very wary of any pharmacological intervention. This needs to be explored. If a patient requires a NSAID and is worried about taking ‘a lot of drugs’, they could be prescribed a medication with a long half life such as piroxicam, which only needs to be taken daily. Drugs with a short half-life, such as ibuprofen, need to be taken three or four times daily to remain in the band of efficacy.
The Size and Formulation of Tablets
Some tablets are rather large and difficult to swallow and for those patients who have problems associated with rheumatic disease, such as Sjogren’s syndrome, or oesophageal strictures this can be a major obstacle.
Some patients find it difficult to remember to take their drugs regularly. This is particularly so in the case of DMARDs as they do not provide immediate effect. Drugs taken daily may be more appropriate for a forgetful patient than those taken less frequently.
Needle phobia can pose a real problem and those who suffer from it would feel that injectable gold or methotrexate is an inappropriate option. This is also problematical when patients need careful haematological monitoring if potentially toxic drug therapy has been prescribed.
Side effects are the major question in the minds of many patients. Time spent at an early stage discussing any adverse effects and how to deal with problems can be very advantageous to both the patient and the nurse. Patients value the time spent talking with the nurse and this helps to build up the nurse-patient relationship at an early stage.
All these topics need careful discussion and consideration if patients are to adhere to their treatments.
ASSESS THE PATIENTS’ KNOWLEDGE OF DRUGS
The initial interview will enable the nurse to assess what the patients know, or think they know, about drug therapy. This may sound demeaning, but it is not. There is evidence that patients have trouble distinguishing between the types of drug treatment. A study that highlighted this lack of knowledge (Hill et al., 1991)
showed there were divergent beliefs about the role of NSAIDs, which are probably the most common of all therapies. Out of a total of 70 patients with rheumatoid arthritis, 15 (21%) believed wrongly that they took many weeks to start working and 11 patients thought they acted as DMARDs and stopped the disease from progressing. Approximately 30% thought NSAIDs such as diclofenac, ibuprofen and indomethacin could induce remission. The majority of patients were taking analgesics; 36% thought these should take with food, and 33% believed that analgesics should only be taken for severe pain. The findings of this study were in keeping with other research (Kay and Punchak, 1988; Mahmud et al., 1995).
Assessing knowledge can be undertaken informally by discussion and questions, or formally, using a questionnaire such as the Patient Knowledge Questionnaire (Hill et al., 1991), or for those with early RA a questionnaire devised by Hennell, Brownsell and Dawson (2004). Obtaining the information by questionnaire has the advantage of producing numerical data that is easier to use as a comparator when assessing the effectiveness of teaching. Having made an assessment of the patient’s knowledge base, this will act as a guide as to what knowledge deficits need to be addressed.
ESTABLISHING SHARED GOALS
Following the initial assessment, the next stage is to establish some shared goals. Bear in mind that a skilled nurse can manipulate a patient education session to include her or his own agenda alongside that of the patient. For instance, if the patient prefers to discuss pain and the nurse perceives the need to teach about drug therapy, incorporating an explanation of the effect of analgesics, NSAIDs and DMARDs will serve to meet both ends!
When establishing goals one of the roles of the nurse is to use professional skill to guide the patient and ensure that their goals are realistic. This is only possible if the nurse has adequate pharmacological knowledge. Reaching the goals is important to the ongoing process, and it is at this stage that patients should start to set down a written contract with themselves. The nurse can give further encouragement by following up the visit by a phone call to enquire if they are having any problems with their drugs and achieving their goals. It is also an opportunity to offer practical advice if they are not.
PREFERRED METHOD OF INFORMATION TRANSFER
Patients like everyone else have their preferred methods of learning. Some like written material, some would prefer visual or audio aids such as videos and cassettes and others like face-to-face communication. These methods will be discussed in detail later in the chapter, but the important point is to discuss this issue with the patient. In reality, many patients will be given verbal instruction through discussions, and written material or aids will back this up.
Having established this information, the patient education programme can commence. The format of individualized programmes is flexible, but it is still important to agree some kind of schedule with the patient. When structuring each session, make sure that you leave plenty of time to incorporate feedback of progress at the start of each session and time to set new contracts at the close.
Contracting usually consists of three basic steps. The patient decides:
• what activity they wish to accomplish in a given time;
• what their plan of action will be;
• whether the contract is realistic.
THE ACTIVITY TO BE ACCOMPLISHED
This is the first step of the contract and although the nurse initiates the contract, the patients should always choose the activity themselves. It is crucial that the contract is undertaken in a very positive manner and the nurse can help by encouraging the patient to use positive expression such as ‘I will take my ibuprofen with food’ rather than ‘I will try to take... ’
THE PLAN OF ACTION
The plan of action is the key to success. It should state exactly:
• what the patient will do;
• how often they will do it;
• when they will do it.
For instance, patients on penicillamine who keep forgetting to test their urine may make a contract that states that they will test their urine once each week on Saturday morning at 9 a.m. They will do this each week for the four intervening weeks before their next clinic appointment. They may decide to jog their memory by placing a note in a prominent position on Friday evening to remind them to save their urine specimen. Once they get into the weekly habit it becomes a routine part of their life.
CHECKING THAT THE CONTRACT IS REALISTIC
This is the third and final stage of contracting. Once the patient has decided on a particular behaviour they wish to change and made their plan, they should be asked, ‘How certain are you that you can achieve your aim?’ This should be followed up by a further question. ‘If I ask you how certain you are that you can do what you say by giving it a score between 1 to 10, 1 is feeling very unsure and 10 being totally certain, how would you score it?’
Few patients have any difficulty with this scoring concept, but if they do it is worth trying a percentage approach (0-100%). You can be reasonably certain they are confident in their ability if they say between 7 and 10 or 70-100% sure of their abilities. If they perceive difficulties they will score less than 7 (70%), and if this is the case, it is important to explore the reasons for their uncertainty and discuss the problems that they foresee. Counselling skills can be helpful in this situation. Try to get the patients to offer their own solutions, but be prepared to provide help if it is needed.
Once the patient is sure that they have set an achievable objective the contract should be set down in writing. Having completed the contract and asked the patient if they would like to discuss anything else, the session should be closed with an overview of what has occurred during the consultation, and a review of the activities they have agreed to undertake before their next visit.
Having completed the session, it is important to document what has been discussed and agreed to. This will help to provide a clear picture of what has been accomplished and what still remains.
Although one-to-one patient education is labour-intensive and therefore costly, a number of studies have demonstrated that individualized patient education programmes are more effective than rigid routine-type programmes (Lorish, Parker and Brown, 1985; Neuberger et al., 1993; Tucker and Kirwan, 1989). It is therefore suggested that this format be used wherever it is practicable.
Many hospitals and community groups have set up structured patient education programmes to be taught to groups of patients, rather than individuals. This method of teaching is becoming very popular, as it can reach greater numbers of patients and is less labour intensive than individualized programmes. However, like any other method it has both positive and negative aspects (Table 4.3). It may be that some skills such as different methods of joint protection, limbering up exercises and relaxation techniques can be taught to groups of patients very effectively. Those patients who have particular problems requiring individual attention need to be given special consideration, and even in a group situation they may require individual time. A generalized overview of the different types of drug therapies can be useful, but those who are embarking on a specific therapy are better catered for in a one to one teaching session.
Table 4.3 Differing aspects of group teaching.
Effective way of teaching skills e.g. OT/PT
Patients meet others with same disease
Share experiences and resolutions
Powerful role models
Wide range of knowledge
Different rates of learning
Discrepancies in levels of skill
Some patients are poor articulators
Difficult to express feelings in a group
Fear of failure or criticism
It should be remembered that different people join groups for different reasons. Group participation can be a very positive experience from which many people benefit both medically and socially, and there is some evidence that patients learn substantial amounts from each other. Indeed one study found that patients attributed the greatest benefit of attending a group programme was learning from and teaching each other (Campbell et al., 1995).
Unfortunately, there will always be those whose expectations are not met, and the best way to counteract this is to be very specific at the outset about who the programme is aimed at and what it is intended to achieve.
Patient education does not have to be undertaken in a formal and predestined manner and every patient encounter should be treated as an opportunity to teach (Daltroy and Liang, 1988). Short, unplanned meetings often take place, for instance:
• at the patient’s bedside;
• in outpatient clinics;
• in GP surgeries.
These short encounters can yield positive results in the hands of a skilled practitioner. A patient who is given a new drug can be asked a simple question such as, ‘When are you going to take your tablet?’ This will highlight any problems, such as whether they realize that it should or should not be taken with food. The ensuing conversation can then be guided in a different direction. For instance, if they are taking a NSAID at lunchtime, it is quite natural to endorse the fact that, to prevent side effects, it should not be taken on an empty stomach. Interactions with other drugs can also quickly be broached.
Chronic diseases are the greatest cause of disability and escalating medical expenditure in the US (Colvez and Blanchet, 1981), the arthritic diseases being the greatest cause of disability in the elderly (Lorig, Konkol and Gonzalez, 1987). Greater longevity results in a proliferation of certain types of arthritis such as osteoarthritis, and its prevalence magnifies the social and economic consequences. Lorig and her colleagues in the USA developed the Arthritis Self-Management Programme (ASMP) in the late 1970s with the intention of reaching as many patients as possible at an affordable price. It is a community-based programme taught to people with almost any form of arthritis during the same programme of six two-hourly sessions over a period of months (Lorig, 1996). It pioneered the use of lay teachers, many who had arthritis, in preference to health professionals to lead the programmes.
As it has developed and research results have emerged, it has incorporated new ideas and ideologies (Hirano, Laurent and Lorig, 1994; Lorig and Gonzalez, 1992). For instance most programmes are now taught by one health professional and one lay teacher rather than by two lay teachers. As predicted, lay teachers have proved as effective as professionals in their teaching skills and are accepted by both patients and professionals (Lorig et al., 1986).
It is likely that the success of the ASMP owes much to its underlying theoretical basis of self-efficacy, the patient’s belief that he or she can affect the consequences of their disease. Perceived self-efficacy, discussed earlier in the chapter, is believed to be a significant determinant of human functioning that operates partially independently of underlying skills.
The topics taught in the ASMP are similar to those of other programmes. However, its authors recognized that imparting knowledge does not necessarily bring about changes in behaviour, but that behaviour changes must occur if patient education is to be of benefit. They therefore developed their programme with an emphasis on:
• development of coping skills;
• symptom management;
• utilization of information.
The ASMP has proved to be remarkably effective and is used extensively in the US, Australia, and Europe (Davis, Busch and Lowe, 1994; Lindroth et al., 1989, 1995; Taal, Rasker and Wiegman, 1996; Taal et al., 1993). It is currently being used in the UK by Arthritis Care and is advocated by the government in the form of the Expert Patient Programme. The latter programme is not disease-specific but a generalized chronic disease self-management programme (CDSMP) from which patients appear to gain great benefit. However, recent research by Lorig, Ritter and Plant (2005) has demonstrated that although both programmes provide positive results, the ASMP is more advantageous than the CDSMP for patients with arthritis and so this programme should be used when sufficient resources are available.
Whether the patient education is formally or informally structured, there are a number of core subjects that need to be addressed at some stage. They should include those that patients have cited as wanting more information about (Bishop, Kirwan and Windsor, 1997) as well as those that health professionals think should be taught. A comprehensive programme should include:
• Disease process such as aetiology, symptoms, blood tests.
• Drug therapy: how to use drugs, their effects and side effects.
• Exercise: the effects and how, when and how often to exercise.
• Joint protection techniques: how and when to use splints and lifestyle alterations.
• Fatigue: its causes and how to conserve energy.
• Pain control: pharmacological and other techniques such as relaxation and distraction.
• Coping strategies: self-efficacy, contracting.
• Diet: its effects on health, fatigue.
• Relaxation: what it is, how it works and how to do it.
• Complementary therapies such as acupuncture, aromatherapy and massage.
• Communication: getting the best out of visits to doctors and health professionals.
• Self-help: knowledge of self-efficacy and approaching voluntary organizations.
• Goal-setting: how best to set achievable targets and reach them.
The list looks rather daunting and in the arc survey (Bishop, Kirwan and Windsor, 1997), some doctors expressed their concern that giving too much information about the diseases, drug treatment and its side effects could cause undue anxiety and stress. However, many patients are keen to know more (Ridout, Waters and George, 1986) as is their right, and so patient education programmes must endeavour to meet their aspirations.
TEACHING ABOUT DRUG THERAPY
The inclusion of a session about drug therapy in a patient education programme is one topic almost universally accepted. It is a subject that almost all patients ask questions about, and it is a topic which health professionals feel they should teach!
Rheumatic diseases are both chronic and unpredictable, which means that patients will need to tailor their drug regimes to meet their day-to-day needs. They can do this only if they have adequate knowledge (Hill, 1995). In addition to this unpredictability, patients who have a rheumatic disease usually require drugs from a number of different families either to alleviate their symptoms or, when feasible, to put their disease into remission. It is important that patients are able to distinguish between the different types of drug so that they can identify those drugs in which dosage:
• can be changed;
• can be safely stopped;
• must be continued.
Nurses usually teach patients about their medications verbally. However, the Association of the British Pharmaceutical Industry (ABPI) (1987) has offered guidance about medication information for patients, and they state that written information should be given as a reinforcing instrument. This advice is echoed by patients (Donovan and Blake, 1992) and health professionals alike (Arthur, 1995). There is some research to show that written information increases the patient’s knowledge. A study by Hill and Bird (2003) showed significant increases in knowledge after patients had read a drug information leaflet. However, written information alone does not appear to provide sufficient benefit. This was highlighted in a recent literature review of the effectiveness of ‘print only’ interventions in increasing patient participation in chronic disease management. This study found that the benefits of written information alone were modest. Of the seven studies assessed, significant knowledge improvement occurred in three, adherence improved in two and quality of life declined in one (Harris, Smith and Veale, 2005). A combination of written information and verbal teaching appears to be more effective than either alone (Vignos, Parker and Thompson, 1976).
In addition the ABPI suggest that the written information should also be:
• brief and succinct;
• in a standardized layout;
• included in each medication pack;
• aimed at a reading age of nine years.
WHAT TO INCLUDE
Obviously the type of drugs that patients need to know about will depend on their diagnosis. The more complicated diseases like RA often necessitate the use of an analgesic, a NSAID and a DMARD. They may also require steroids in one of their many forms, oral iron, an additional pain modulator such as amitriptyline and, if they take methotrexate, supplements such as folic acid. This is in addition to drugs that they may be taking for other common health problems such as hypertension or cardiac disease.
Clearly someone taking a plethora of drugs will have a lot to learn and it is best to give information in small, manageable helpings as poor recall of information is an accepted problem. Anderson et al. (1979) has shown that verbal information is easily forgotten and that patients only recall about 40% of the information presented to them. It is therefore best:
• not to overwhelm patients with facts as they only remember the first four or five;
• to present the most important points first as they recall best what is said first;
• discuss the patient’s priorities, as they will remember what they believe important;
• provide written back-up.
However, each drug needs to be discussed fully and the teaching sessions should include:
• the name of the drug;
• its purpose;
• how long it takes to work;
• dosage instructions;
• the timing of administration;
• how it should be taken;
• the duration of therapy;
• possible common side effects;
• what to do if side effects occur;
• interactions with other drugs;
• special precautions;
• a contact in case the patient has a problem.
This is rather a long list and bearing in mind the recall problems the most commonsense approach is to talk through a drug information leaflet such as the one shown in Appendix 4.A.
It is essential to ensure that patients understand that they have certain responsibilities when taking drugs that have the potential to cause life-threatening adverse effects. However, the point of the exercise is to inform rather than frighten and so it is imperative to ensure that patients feel supported by the nurse and feel free to contact them if they have a problem.
When teaching about drug therapy, ask questions to check that the patient understands what they are being told. For instance in the case of methotrexate:
• ‘What day do you think that you will take it on?’
• ‘What do you think the best time of day to take it will be?’
• ‘When will you take your folic acid?’
• ‘Which day will you be able to go to have your blood taken?’
These questions will give an indication as to whether the patient understands the implications. It is also a good idea to phone the patient after they have taken their first or second dose to see if they have remembered and to check that they have made arrangements for their safety bloods if they are being checked by the GP.
RISKS AND ADVERSE EFFECTS
One question that nurses ask is how much to tell the patient about risks and side effects. A survey undertaken in 1975 by Ascione and Raven (cited in Meichenbaum and Turk, 1987) showed that 75% of physicians did not wish patients to be told about the potential side effects of prescribed medication. The reason for this appeared to be the fear that patients would not adhere to their medications if they knew that they held risks. Today the climate has changed and the publication of the Patient’s Charter and The Health of the Nation gives patients the right to information, which enables them to make an informed choice.
It would be impossible and counterproductive to tell patients about all the possible side effects to each drug that they take. The most reasonable approach is to discuss the most common adverse reactions, making sure that you are reassuring and teaching them how to prevent problems occurring. In the case of unpreventable adverse problems, such as thrombocytopenia, reassurance as to the effectiveness of surveillance and the reversion to the normal state after cessation of the drugs should be emphasized.
Another effective strategy is to stress the positive effects of the drug therapy, bearing in mind not to promise the earth! Remember the nurse can be a powerful persuader whose role includes giving advice, instruction and suggestions.
There are a number of techniques that will help to reinforce patient education. These include:
• written material;
• computer programmes.
This has already been alluded to, but the importance of written information cannot be overemphasized. Drug information leaflets are invaluable, and patients themselves are aware of this (Donovan and Blake, 1992). There is also research evidence to show their worth in the community (Gibbs, Waters and George, 1989) and in the outpatients clinic (Hill and Bird, 2003). The results from these studies show that following receipt of an information leaflet, patients improved their knowledge of how to take their medications and their side effects. There is a wealth of written information already available, and organizations such as Arthritis Care and the Arthritis Research Campaign (arc) produce some excellent literature. However, many rheumatology departments still prefer to produce their own drug information leaflets, mainly because prescribing and monitoring practice varies from area to area. Producing this material is an art in itself and thought needs to be given to the:
• purpose of the material;
• intended recipient;
• cost of the exercise;
• quality of the finished product.
The Purpose of the Material
The purpose of a drug information leaflet is to inform and empower the patient, and enable them to share their information with their family and carers. As verbal information is easily forgotten, a hard copy acts as an aide-memoire that can be kept and referred to as the occasion arises. Although patients find this information useful, it should be remembered that knowing and doing are different things. One can know that an analgesic drug can help to modulate pain, but this is not always enough of an inducement to take it! Informing patients by providing a drug information leaflet will not necessarily increase their adherence to their drug regimen. However, if this activity is a component of a patient education programme it will certainly help.
The Intended Recipients
One of the most important factors to consider when writing information is the readership. The majority of the population is not familiar with medical terminology and it is difficult to write patient literature without using it! However, it is possible providing the following guidelines are used (Boyd, 1987):
• keep the sentence structure simple;
• use one- or two-syllable words;
• paragraphs should be short;
• use lay language like ‘feel sick’ not ‘nausea’, or ‘poor clotting’ not ‘thrombocytopenia’.
Always be as positive as possible, using positive rather than negative language. For instance ‘do remember’ is better than ‘don’t forget’. Personalizing the information also helps so, use words like I, we, us throughout the document. The format is also important. Most authors now use a question-and-answer format, such as that shown in the methotrexate leaflet in Appendix 4.A. Lastly and very importantly, include information that the patient wants to know as well as information that you feel they ought to know. Nurses should draw upon their experience with their patients to amass this information, but it may also be appropriate to undertake some interviews with patients of different ages and who have had their disease for differing lengths of time.
The information presented should be written at a level that is understandable to the patient. People with rheumatic disease are not a homogeneous population; they come from a wide range of social and educational backgrounds. If the information is to be accessible to the majority of patients, it must be readable by those with poorer reading skills. This was highlighted in a recent research project in which 12 out of 100 patients surveyed in a rheumatology outpatient clinic were shown to have a reading ability of children aged 73/4-13 years (Hill and Bird, 2003). Although 88% the patients interviewed did not have problems with their reading, these 12% would have had difficulty with much of the information already in the public domain. Some nurses have expressed their doubts that pitching the material at those with lower reading skills will seem demeaning to those with higher abilities. Doak, Doak and Lorig (1996) are reassuring on this matter and state that both research and experience shows that adults find easy to read material is:
• easier to remember;
• faster to learn.
Assessing the Readability of Information
Once the information has been written, it is a good idea to assess its readability. The readability of a document refers to the reader’s ability to decipher the text (Meade and Smith, 1991). There are a number of formulae that can be applied to the text that estimate the level of difficulty. The ease of reading depends upon the structure of sentences and the length of the words used. Reading formulae are therefore based upon the number of words in each sentence and the number of syllables in each word. Commonly used ones include:
• Flesch Reading Index (Flesch, 1948);
• Dale-Chall Formula (Dale and Chall, 1948);
• SMOG Grading (McLaughlin, 1969);
• Fry Formula (Fry, 1968).
There is little to choose between these formulae, so use the one most easily available to you. The more popular word processor packages have readability formulae installed in them, for instance Word for Windows has the Flesch Index. This formula was used to assess the methotrexate information leaflet (Appendix 4.A.) and showed it to be in the ‘fairly easy’ to read category. It is not necessary to test the readability of every word and sentence within a lengthy document. Indeed there is often considerable variation within most writings. It is usually sufficient to select two or three different sections of text. The Reference section at the end of this chapter lists sources of additional and more in-depth information on readability assessment.
Reading formulae are useful tools but they do not negate the need for good writing, and accurate information. However even well-written, easily read material is likely to end up in the waste bin if its layout is poor. The patient needs to be encouraged to read it and the use of an attractive, clear typeface will help. Consideration should also be given to those who have some difficulty with their eyesight and a minimum type size of 12 point is recommended. A cluttered and busy design is off-putting. It is much better to leave plenty of white space between lines and 11/2 or double spacing looks attractive.
Avoid using capital letters for headings, because it is more difficult to read. If you want something to stand out try using a different style, bold or larger type.
The Cost of the Exercise
Obviously cost has to be a consideration. Even a short drug information leaflet can be costly if you take into account the amount of time and effort put into preparing and producing it. If large numbers are required over a long period of time, it is important to make sure that you secure adequate funding into the future. Take into account that medications and any monitoring requirements may change and drug information needs to be reviewed frequently and updated as required.
The Quality of the Finished Product
The information available from agencies such as Arthritis Care and arc is of excellent quality in both content and appearance. It does not make sense to reinvent the wheel! It is only worth expending the time and energy needed to produce new written material if existing material is not suitable for the needs of your clients. It is always worth taking the time to review the material already published before embarking on the complicated task of producing your own.
VIDEOS AND CDs
Videotapes are largely extinct now and CDs are the modern replacement. They are an excellent adjunct to face-to-face teaching particularly for the teaching of skills such as exercise. Videos or CDs can be used at home or shown to groups and are excellent for those who have difficulty reading. They can also be used to demonstrate to patients or their relatives how to give injections. Some patients, particularly those who are in paid employment, find it difficult to attend a surgery to have gold or methotrexate injections. Being able to undertake this themselves not only saves them time; it enhances their feeling of independence. At present new drugs that require subcutaneous administration are being tested in clinic trials. There is no reason why patients cannot be taught to self-administer, and CDs demonstrating injection techniques are invaluable teaching aids.
Audiocassettes are an excellent method of providing information for patients who cannot read or are blind or partially sighted. They are in commonly used to teach relaxation techniques or distraction therapy. They are cheap, easily available and easy to use.
Computer-assisted learning has enormous potential, but even today not everyone has a computer. A suitably programmed computer can not only present information and demonstrate skills, it can also answer questions posed by patients. Some research undertaken in the USA showed that patients who used a computer to access a patient education program enjoyed it. They also gained more knowledge, improved their outlook on life, were more hopeful of a good prognosis and changed their behaviours when compared to a control group (Wetstone et al., 1985). This type of program has also been advocated for use in the UK (Luker and Caress, 1989) as it allows the patient to access information in whatever order and time that they require it. This freedom of choice empowers the patient rather than the educator and will be seen by some nurses as a positive move towards self-care, but by others as a threat to their authority.
The greatest reduction in disability may be achieved by early intensive intervention (DeVellis and Blalock, 1993) but there is a dichotomy within the realms of rheumatology about the ultimate time to commence patient education. There are occasions when sharing information at the wrong time can make the situation worse rather than better for the patient. For instance, the nurse may feel that the patient needs to know about drug therapy when the treatment begins. However this may be detrimental if the patient is in a state of grief or bereavement reaction that sometimes follows the confirmation of their diagnosis (Westbrook and Viney, 1982). Indeed Donovan, Blake and Fleming (1989) suggest that patient education at this stage can exacerbate a state of depression in the newly diagnosed patient. It may be better to use counselling sessions until the patient has accepted their illness and then proceed to patient information-giving (Hill, 1997). To be able to do this successfully, nurses need to develop the skills to enable them to be sensitive to the cues given out by the patient. The nurse then needs to know when the patient is ready to move on from the gathering information stage to the point where they are ready to make positive behaviour changes. The reason that this is important is that the results from research comparing the effects of information-giving, counselling and behavioural therapy show that only the latter demonstrate significant effects (Reimsma, Kirwan and Rasker, 2002). However, assessing readiness for change takes great skill as well as knowledge and understanding. This expertise takes a number of years to acquire and Benner (1984) has identified the acquisition of this kind of competence as that which transforms the nurse from a novice to an expert practitioner.
READINESS FOR CHANGE
Prochaska and DiClemente (1992) have ascertained that there are five stages of change:
• Precontemplation - when the patient is not seriously considering changing their behaviour. At this stage and the following contemplation stage, patients will need information about their disease and therapies as this will aid their decisions.
• Contemplation - the patient weighs up the apparent benefits and cost of behavioural change against the status quo.
• Preparation - once the decision to make a behavioural change has occurred, the patient develops their plan of action.
• Making the change - the patient actively develops skills and habits that enable them to undertake the behaviour regularly.
• Maintenance - this is the final stage in which the patient develops strategies to maintain long-term behaviour change.
Identifying which of the above stages the patient has reached can be an import factor in determining their participation in patient educational programmes (Keefe et al., 2000).
There are a range of other approaches that the practitioner can use to facilitate positive behaviour changes and these are discussed at length in an excellent article by Hammond (2003).
There is an extensive literature on patient adherence. Most is in agreement that many patients do not adhere to their medication regime as it is prescribed (Hill, 2005a). This is thought by many to be a major problem and has been cited as perhaps the most important cause of treatment failure (Henry, 1985). In 1984 a literature review estimated that at least 50% of patients with RA were non-adherent with their therapies, irrespective of the nature of the intervention (Belcon, Hayes and Tugwell, 1984). Other authors have estimated medication adherence to range from 30-70% (Donovan and Blake, 1992; Feinberg, 1988). Pullar et al. (1988) found incomplete adherence in 42% of patients prescribed high doses of penicillamine as their diseasemodifying drug. Whichever report one reads there is agreement that adherence is a problem, particularly in chronic diseases. The World Health Organization (WHO) has recognized this and has stated that ‘poor adherence to treatment of chronic diseases is a worldwide problem of striking magnitude’ and cites adherence to long-term therapy for chronic illnesses in developed countries averaging just 50% (World Health Organization, 2003). It is interesting that adherence does not appear to be linked to severity of symptoms. An RA study undertaken by Viller et al. (1999) in different countries demonstrated this.
Different authors have tried to shed light on the reasons for this high rate of nonadherence. A study of newly diagnosed patients with juvenile RA attending a clinicbased, nurse-administered educational-behavioural intervention of adherence with NSAID was conducted over 13 months by Rapoff et al. (2002). The experimental group and their parents saw a 10-minute video about adherent enhancing strategies. The patients also received a booklet for back-up. Strategies included:
• pairing medication taking with an established behaviour such as brushing teeth;
• writing down when they took their medication;
• positive reinforcement such as praising and rewarding;
• discipline such as using time out for intentional non-adherence.
The control group and their parents viewed a videotape which described their disease, symptoms and treatments. The nurse answered any questions and provided written information. Results demonstrated that the experimental group were significantly more likely to adhere to their NSAIDs than the control group over time.
Other research has shown that some of the reasons for intentional non-adherence are:
• complexity of treatment regimens;
• dose frequency;
• lack of belief in the medication;
• lack of family support.
However patients are not always non-adherent by intention. Some simply forget to take their drugs or are too busy or away from their usual environment. In 1989, Lorish et al. surveyed 200 patients with RA and identified 16 reasons for both intentional and unintentional missed doses. The majority of intentional nonadherence was attributed to side effects of the medication; changes in usual activity accounted for the majority of unintentional non-adherence.
Many health professionals believe that adherence is influenced by factors such as lack of information about the disease process and its ensuing consequences, and the purpose and possible outcomes of treatment. Katz (1982) has stated ‘one of the major factors contributing to unintentional non-adherence may be the patient’s lack of understanding as to the nature of the treatment program’. There are a few studies that have explored the association between patient education and adherence with medication. Lee and Tan (1979) studied drug adherence in 108 patients, who were asked whether the physician had given an adequate explanation of the nature of their disease and the reasons for taking their prescribed medication. In all, 53% of the adherent patients thought that they had been given an adequate explanation of their disease compared with 31% of the non-adherent patients. This was a significant difference between the two groups (p<0.05). Of those who thought they had received a sufficient explanation of their medication, the proportion that actually took their drugs compared to those who did not was similar. This research seems to indicate that knowledge of the disease has more influence on adherence than knowledge of medication alone. However, this study relied solely on the patient’s perception of adequacy of explanation and there was no attempt to measure knowledge in an objective fashion. Owen et al. (1985) studied 178 patients with rheumatoid arthritis and noted that poor comprehension of the purpose of prescribed medications was an important factor in non-adherence. They concluded that to obtain optimal benefit from medication, patients must be taught about their drugs.
Hill et al. (2001) has shown that patient education significantly enhances patient adherence with drug therapy and increases their knowledge of their drugs, their disease and their treatments. Patients who received patient education also perceived their disease as having less impact on their lives than controls who were on the same disease-modifying drug therapy but did not receive patient education.
The definitive answer to changing non-adherence is for the most part elusive; this is a very complex problem, but reviews by Haynes et al. (2000), McDonald, Garg and Haynes (2002), Hill (2005b) at least point the way.
Patient education plays an important and effective role in the treatment of rheumatic diseases, and nurses have a significant role to play in educating their patients. One of the aims of nursing is to assist patients to manage their own lives and live as fully and independently as possible. Delivering patient education programmes to our patients certainly goes some way to achieving this goal. However, patient education should not be seen as a separate function, but rather as an integral part of the practice of therapeutic nursing.
Patient education is an effective method of enhancing what we think of as conventional therapy for rheumatic disease. There is abundant literature to show that patient education programmes increase knowledge - Gerber et al. (1987), Hill et al. (1994), Lorig, Konkol and Gonzalez (1987), Hirano, Laurent and Lorig (1994), to name but a few. Recent work by Kirwan et al. (2005) showed that patients in this study also gained knowledge and reported personal benefit, but only improved selfefficacy for pain and only for a short time. Some of these findings were concordant with the Cochrane review undertaken by Reimsma, Kirwan and Rasker (2002), which demonstrated short-term benefits that were not maintained over time.
Patient education also changes behaviour patterns - for example, increasing the practice of exercises, joint protection and relaxation - and improves health status measures such as pain, stiffness and functional ability (Hawley, 1995; Lorig, Konkol and Gonzalez, 1987).
The question of adherence with drug therapy is very important, but it should be remembered that patients may have good reasons why they do not take their drugs, and they have every right not to do so. The essence of patient education is empowerment that gives patients choice. Nurses should accept that if they have educated their patients to the point where they feel sufficiently knowledgeable to make informed choices, be it to take their drugs or not, they have served them well.
APPENDIX 4.A METHOTREXATE INFORMATION SHEET
What is Methotrexate?
Methotrexate is one of a group of drugs known as disease-modifying drugs. It is used to treat several types of arthritis, including rheumatoid arthritis. It usually comes as a tablet but it can be given by injection.
How does it work?
It is thought to slow down disease activity. It can also make your immune system (your body’s defence system) less effective and so it is always used with care.
It is not a painkiller, and so you should continue taking your usual antiinflammatory tablets and painkillers.
How long will it take to work?
Methotrexate builds up slowly in the body so it does not work straightaway. You may start to feel better after only 3 weeks, but it could take 12 weeks or even longer.
What dose will I take?
When you first start on methotrexate you will begin on a very small dose. This will be increased slowly until you reach your normal dose as follows:
• 2.5 mg a week for one week;
• 5.0 mg a week for one week;
• 7.5 mg a week for one week;
• 10 mg a week as your normal dose.
A few people need a higher dose than 10mg a week and it can be taken in doses up to 25mg a week in some cases.
When should I take the tablets?
You will only take methotrexate once a week. You can take it at any time of the day but you should always try to take it on the same day each week. Because you only take it once a week it is easy to forget. Most people find it best to get into a routine of always taking it at the same time on the same day; before breakfast on Friday, for example.
Take methotrexate with a full glass of water on an empty stomach. If it gives you indigestion take it with a little food such as a cream cracker.
How long can I stay on the tablets?
If you have no bad side effects you can stay on it for as long as it is helping. Some people have been taking it for many years.
Are there any side effects?
Only a few people get side effects. They usually occur when you first start taking the tablets. They are usually mild and get better in a few hours. They are:
• feeling sick;
• skin rash;
• mouth ulcers.
More important side effects are:
• large bruises caused by changes in the clotting cells (platelets) in the blood;
• sore throat and fever caused by changes in the white cells that fight infections;
• sudden breathlessness or cough.
WHAT SHOULD I DO IF I GET SIDE EFFECTS?
If you get side effects tell the doctor or nurse straightaway.
Do I need special tests because of my tablets?
Yes. Before you begin your methotrexate you should have a chest X-ray.
When you first start on methotrexate your blood must be tested every two weeks for the first eight weeks and then once a month. You will need these tests all the time that you are on methotrexate. They check that your blood can clot properly and that your white cells can fight infections.
If your GP checks your blood, phone the surgery and ask if your blood tests are normal. If there are any problems you may have to stop taking the tablets for a while until your blood gets back to normal.
Can I take other medicines with my tablets?
Some medicines do not mix well with methotrexate. These include:
• diuretics (water tablets);
• some anti-inflammatory tablets including aspirin.
Always remind your doctor that you are taking methotrexate if she or he prescribes other medicines for you. You should also tell the chemist if you buy ‘over the counter’ medicine.
Is there anything else that I must be careful of?
If you have never had chicken pox and come into contact with someone who has chicken pox or shingles, you must tell your doctor immediately.
If you catch chicken pox or shingles tell your doctor immediately.
You should not have a vaccination that uses a ‘live vaccine’ (polio or German measles are the most common). Flu vaccines are safe. To be certain, tell the doctor or nurse that you are on methotrexate before you have a vaccination.
Avoid alcohol, but the very occasional moderate drink on a special occasion will do you no real harm.
Is Methotrexate safe in pregnancy?
Methotrexate can harm an unborn baby. Do not use it if you are pregnant. If you get pregnant while you are taking methotrexate, tell your doctor as soon as you
know. If you are planning to have a baby, discuss it with your doctor or nurse. You should stop taking methotrexate six months before you plan to have a baby. This applies to men as well as women.
You should not breastfeed while you are on methotrexate.
Methotrexate can reduce sperm count in men.
Remember to keep all medicines out of the reach of children.
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