VOL: 98, ISSUE: 47, PAGE NO: 38
Dr Richard Gray, PhD, RN, is MRC fellow, at the Health Services Research Department, Institute of Psychiatry, King’s College, London.
Deborah Robson, BSc, RN, is adherence therapy nurse,Daniel Bressington, DipHE, RN, is medication management tutor-practitioner, both at the Health Services Research Department, Institute of Psychiatry, King’s College, London.Daniel Bressington also works at the National Psychosis Unit, Bethlem Royal Hospital, Kent.
There can be little doubt that antipsychotic medication reduces the positive symptoms of psychosis, such as hallucinations and delusions, and if taken continuously may prevent these symptoms returning (Marder, 1999; Gray, 2001). Nurses who work with people with a diagnosis of schizophrenia will know from personal experience the positive effects that these drugs can have. They will also know that there are many symptoms, such as isolation and withdrawal, that antipsychotic drugs are not particularly effective at treating and that the drugs commonly cause a range of distressing and disabling side-effects.
For many service users and nurses, such side-effects are considered a necessary evil. However, in the past decade a new generation of so-called ‘atypical’ antipsychotic medicines has been introduced. These drugs offer a means of controlling psychotic symptoms while subjecting the patient to fewer unpleasant side-effects. The first of these was clozapine in 1990, followed by risperidone, olanzapine and quetiapine. These medicines are as effective as the more conventional drugs at treating hallucinations and delusions and may also help treat other symptoms such as social isolation, withdrawal and low mood. However, the most important advantage of these new medicines is that they are better tolerated. Movement disorders, such as akathisia and parkinsonism that were common with older drugs are rarely seen in people taking atypical medicines.
The problem of non-compliance
Despite the effectiveness of these newer medicines, mental health nurses will know only too well how common it is for people with a diagnosis of schizophrenia to stop taking their medication. This may lead to a relapse of their psychosis, with a subsequent readmission to hospital. Professionals often describe stopping medication as ‘treatment non-compliance’. However, for many service users this language is unacceptable and demeaning. Non-compliance implies a power imbalance where a passive patient has not done what an expert (be it a doctor or nurse) has told them to do. Concordance may be a more acceptable term, as it suggests a collaborative process of decision-making regarding treatment (Gray et al, 2002). However, changing language alone will not change the practice of health care professionals.
We know from a large number of studies that stopping antipsychotic medication is very common. Although estimates of the incidence vary, it seems likely that about 50 per cent of service users who begin treatment with antipsychotic medication will have stopped taking it within a year and that 75 per cent will stop within two years (Weiden and Olfson, 1995).
Virtually all of those who stop taking their medication will experience a worsening of their psychosis or a full blown relapse that may require hospitalisation. Such high rates of stopping medication may initially seem alarming. However, they are similar to rates seen in people who have been prescribed antidepressants and in people with other chronic diseases, such as hypertension, HIV, diabetes or asthma, where complex maintenance treatment is required. Deviating from a prescribed treatment regime is not uncommon and perhaps should be thought of as perfectly normal behaviour.
Why people do not take their medication
Within the literature many factors have been identified that appear to influence an individual’s decisions about taking medication (Gray et al, 2002). These are summarised in Table 1. The theme that emerges from this evidence is that the way in which people decide about whether to take medication is complex and is affected by social issues as well as personal beliefs. Our interventions, therefore, need to be individually tailored to address the particular concerns that a person has about taking antipsychotic medication.
Much of the research that has been conducted in the area of concordance has evaluated the impact of service user education. Educational interventions aim to provide information to service users about their illness and their medication with the goal of increasing understanding and promoting concordance.
Service user education has been evaluated using a variety of methods including a number of randomised controlled trials (Macpherson, 1996; Gray, 2000). Results of these studies have shown that although giving information will improve service users’ understanding it does not reduce the number who stop taking medication. This is perhaps not surprising because educational interventions do not address many of the important factors that influence people’s decisions about taking medication.
In recent years research into concordance interventions has focused on cognitive behavioural therapy and motivational interviewing (Gray et al, 2002).
Using these techniques, Kemp and colleagues (1996) devised an intervention called compliance therapy. The key principles of this approach include working collaboratively with service users, emphasising personal choice and responsibility and focusing on concerns that service users have about treatment.
The intervention is divided into three phases. Phase one deals with service users’ experiences of treatment by helping them review their illness history. In phase two service users are encouraged to voice their concerns about treatment and any ambivalence about taking medication is explored. Phase three deals with long-term prevention and strategies for avoiding relapse.
When compliance therapy was evaluated in a randomised controlled trial (Kemp et al, 1996; 1998) the results were encouraging. A total of 74 service users were assigned randomly to receive compliance therapy or non-specific counselling. Service users had four to six sessions with a research psychiatrist lasting, on average, 40 minutes. An 18-month follow-up study showed fewer relapses in those who had received compliance therapy.
An understanding of service users’ subjective experiences of psychiatric medication and treatment provides a benchmark of current practice and signposts areas where there is scope to make improvements. With this in mind we recently carried out a survey that examined users’ experiences of treatment with antipsychotic medication. Most reported that they were not involved in treatment decisions, took medication because they were told to, had not been given written information about their treatment or had not been warned about potential side-effects.
The results of this survey would seem to suggest that there is scope for improvement. Mental health professionals may need to learn to work more collaboratively with service users, helping them to make decisions that are right for them. They would do well to utilise some of the techniques that have been shown to be useful in compliance therapy.
Perhaps the most effective way of helping mental health professionals develop new skills is through targeted skills training. For example, there is evidence that skills-focused training in family work interventions develops mental health nurses’ clinical skills which, in turn, result in a reduction in the symptoms that service users experience (Brooker et al, 1992). However, given that there are some 60,000 mental health nurses working in the UK, a training package to develop mental health nurses’ skills in managing medication collaboratively with service users will need to be relatively brief, so that training can be made widely available.
Medication management training
We developed a 10-day medication management training programme for mental health nurses based on available evidence and advice from a number of experienced clinicians and academics. Training focused on teaching motivational interviewing and key compliance therapy skills (see Fig. 1).
We also trained nurses to use a range of standardised measures to assess side-effects and service users’ views of treatment. These were outlined by Kemp (1997):
- Symptom severity: KGV-M Symptom Scale (Krawiecka et al, 1977);
- General side-effects: Liverpool University Neuroleptic Side Effects Rating Scale (Day et al, 1995);
- Extrapyramidal side-effects: Simpson Angus (Simpson and Angus, 1970);
- Tardive dyskinesia: Abnormal Involuntary Movement Scale (Guy, 1976);
- Beliefs about treatment: Drug Attitude Inventory (Hogan and Awad, 1992); Insight and Treatment Attitude Questionnaire (McEvoy et al, 1989).
Training featured a psychopharmacology component that considered effective treatment strategies for schizophrenia and the management of common side-effects. A multidisciplinary team that included clinical nurse specialists, psychologists and psychiatric pharmacists ran the courses. Role-play rehearsal of clinical interventions, such as exploring ambivalence, played a major role in developing clinical skills in a safe environment before they were used in practice. Nurses also received weekly clinical supervision during training.
Impact of the training
We set out to establish whether medication management training improves the clinical skills of mental health nurses and found that following training there were statistically significant improvements in nurses’ medication management skills and knowledge. Trainees also said that they were able to put into practice the new skills that they had acquired (Gray, 2001).
We then moved on to undertake a randomised controlled trial (Gray, 2001) to examine whether training improved nurses’ skills and service user outcomes. A total of 60 mental health nurses took part in the trial and were randomised either to receive 10 days of medication management training or to continue with their care as usual.
Each mental health nurse identified two service users who they were working with. A research worker then completed a number of outcome measures with the service user at the start of the study and again after six months. We were mainly interested in finding out whether the training lessened the severity of mental symptoms experienced by the service users.
We assessed mental symptoms using the Positive and Negative Syndrome Scale (Kay et al, 1989), a measure that is often used in research with people who have a diagnosis of schizophrenia. Much greater improvements in mental symptoms were seen in service users who were on the caseload of nurses who had received medication management training compared with those who were on the caseload of nurses delivering care as usual.
Training the trainers
Following on from the positive results of our clinical trial, in partnership with a pharmaceuticals company, we started a medication management ‘train the trainers’ project. Our aim was to make training available throughout the UK.
We invited senior mental health nurses from across the UK to attend a two-week course. The aim was to disseminate skills with a cascading model of training - that is to provide the senior nurses with the knowledge and training material to run medication management courses within their own clinical areas. This course ran during 2001 and 2002 and produced some 31 trainers across the country. Around 100 medication management courses have been run and more than 400 nurses have been trained.
Although generally effective, antipsychotic medication does not achieve its potential in preventing relapse in a significant number of cases. This is because service users, for a variety of complex reasons, stop taking it. There is evidence to suggest that involving service users in their treatment decisions, discussing their past experiences of treatment, listening to their concerns about medication and examining long-term relapse prevention strategies will promote increased concordance and reduce the chances of a relapse. We found that mental health nurses who have received medication management training are able to do this work with service users and consequently produce improved health outcomes.
Recently we have been working to make medication management training more widely available through a national ‘train the trainers’ project. By educating nurses in medication management we hope to improve treatment concordance which will ultimately improve the health of people who have a diagnosis of schizophrenia.