The aim of this dissertation is to explore the factors affecting concordance with prescribed antipsychotic medications. The rationale for selecting this topic is derived from personal working experience with mental health service users. Having worked as a nursing assistant for the past eight years on acute admissions wards and as a student nurse for the past three years it was observed that a large proportion of compulsory re-hospitalisation under the Mental Health Act 1983 occurs due to relapse of mental illness as a result of non- concordance with medications, particularly service users with a diagnosis of schizophrenia. This led to believe that concordance with antipsychotic medications plays a crucial role in managing psychosis as it positively contributes towards the effective management of the illness in the community. In support to this view, Gray et al (2002a) assert that prophylactic use of antipsychotic medication reduces the risk of relapse among individuals with schizophrenia and non-concordance with medication has the potential for frequent re-hospitalisations. This has been recognised as the revolving door syndrome. During most mental health placements it was noted that non-concordance with medication has become significant, as this has been identified as a risk factor within the risk assessment checklist. Furthermore, despite the well-documented therapeutic effect of antipsychotic medications, some patients are reluctant to accept treatments and some may even wish to cease taking medications altogether. Therefore, this empirical knowledge has reinforced the desire to examine the factors associated with non-concordance with antipsychotic medications.
According to Brimblecombe et al (2005) medication is one of the major therapeutic tools available to help people with schizophrenia. There is also growing evidence that schizophrenia can be treated effectively with a range of psychological and social interventions together with antipsychotic medications. Norman & Ryrie (2004) emphasised that antipsychotic medication has been the mainstay of treatment for schizophrenia since the 1950s when it was discovered that the dopamine antagonist haloperidol and chlorpromazine exerted antipsychotic effects. The National Institute for Clinical Excellence (NICE) (2002) recommends that atypical antipsychotic drugs such as amisulpride, aripiprazole , olanzapine, quetiapine or risperidone must be considered in the choice of first-line treatments for individuals with newly diagnosed schizophrenia or to promote recovery for those who have experienced unacceptable side-effects on conventional antipsychotics, as atypical antipsychotics appear to have less extrapyramidal symptoms (side effects) than the conventional antipsychotics such as haloperidol and chlorpromazine.
The care and treatment of individuals with schizophrenia have advanced considerably over the past ten years, since the introduction of atypical antipsychotics and medication continues to be the first line treatment for schizophrenia (Walker & MacAulay, 2005). However, Gray et al (2002b) claim that despite the effectiveness of these atypical antipsychotic drugs, non- concordance with prescribed antipsychotic medications is observed in around 50% of people with schizophrenia and is a major preventable cause of psychiatric morbidity. In addition, Mitchell & Selmes (2007) claim that over the course of a year, about 75% of patients will discontinue prescribed antipsychotic medications, often coming to the decision themselves and without informing a health professional. According to Gray et al (2006) relapse rates is five times higher among individuals with schizophrenia, who are non-concordance with medication compared with concordance. Non-concordance during acute treatment of psychosis leads to chronic symptomswhereas non-concordance after remission increases the risk ofrelapse and both may have serious consequences; re-hospitalisation (Hamer & Haddad, 2007). Furthermore, the impacts of non-concordance with medication not only affect the individuals with schizophrenia, as each relapse causes a stepping down of cognitive functioning which is rarely retrieved but also their carers and the costs of treatments (Institute, 2007).
To facilitate this project as a literature review, an analysis of secondary sources only will be use. Secondary sources were mainly obtained from nursing journals such as Nursing-Standard, Nursing-Times, Advances in Psychiatric Treatment, Mental health practice, Schizophrenia Bulletin and The British Journal of Psychiatry, containing the key words: schizophrenia, oral antipsychotic, medication management and non-concordance. An Internet search of Google was also done with the same keywords to access any relevant documents. To address the factors affecting concordance with prescribed antipsychotic medications, these will be divided into patient-related factors, medication-related factors and clinician-related factors.
According to White (2007) schizophrenia is a debilitating psychiatric disorder characterised by a range of positive and negative symptoms and these symptoms were first described in detail by the British neurologist Hughlings-Jackson in the late 1800s. There is no physical test for schizophrenia rather it is diagnosed by the presence of certain positive and negative symptoms over a period of time (Brennan, 2001). According to Issacs (2006) the neurotransmitter hypothesis suggests that the dopamine over activity in the mesolimbic dopamine pathway, which is between the midbrain, is thought to cause the positive symptoms of schizophrenia and dopamine under activity in the mesocortical dopamine pathway is thought to result in the negative symptoms of schizophrenia. Positive symptoms represent a distortion of normal experience, such as delusions, hallucinations and thought disorder, whereas negative symptoms represent a loss or dimming of normal function and social norm, such as avoidance of social interactions (Baker, 2003).
There are different types of schizophrenia such as paranoid, disorganised, catatonic, undifferentiated and residual (Issacs, 2006). However, Gillam (2002) claimed that the exact causes of schizophrenia remain unclear but genetic, environmental and social factors are all thought to influence its development. The risk for a child to develop schizophrenia is 46%, if both parents have the disorder (Kirk et al, 2006). Women who have certain viral illnesses during their pregnancy may be at a greater risk of giving birth to children who later develop schizophrenia and the 1957 influenza A2 epidemics in England resulted in an increase in schizophrenia in the offspring of women who developed this flu during their pregnancy (Frankenburg, 2007).
1 in 100 UK populations will develop schizophrenia in their lifetime and the world prevalence is about 2-4 in 1000, as it affects men and women equally (Rethink, 2008). However, the onset in men is about five years earlier than women with the peak age of incidence is between 16 and 25 and the presentation of the illness varies tremendously, not only between individuals, but also within the same individual at different stages of their illness (Magorrian, 2007). Schizophrenia seems to be more common in city areas and in some ethnic minority groups and premature mortality in people with schizophrenia is 2 to 3 times higher than that in the general population (Royal college of Psychiatrists 2008). The premature mortality might be due to poorer health care, physical health, unhealthy lifestyles and people with schizophrenia may be at greater risk of type 2 diabetes as a result of antipsychotic medications (Nash, 2005). Moreover, according to WHO (2008) schizophrenia is a treatable disorder but many individuals remain untreated regardless of effective treatments.
There has been an unresolved debate about how best to define patients’ engagement with medications and until the 1980s most work on patient engagement with medications regimes was described as compliance (Norman & Ryrie, 2004). The term compliance is often used interchangeably with adherence or concordance (Snelgrove, 2005).
According to Kikkert (2006) the term compliance has fallen out of favour in clinical practice because it carries an assumption that patients are the passive recipients of clinicians and implies unquestioning obedience with no opportunity for patients’ choice. To add to the complexity of this term, patients can be intentionally or unintentionally non-compliant such as a deliberate decision not to comply with treatment and patients may have misunderstood the guidance that they have been given or unable to open the medication container. Velligan et al (2006) claimed that in recent years there has been a shift from this paternalistic model of doctor-patient interactions with the consequent preference for the use of the term adherence. However, while adherence emphasises negotiation between clinician and patient, it still implies a degree of passivity and obedience (Snelgrove, 2005).
Gray et al (2002b) assert that concordance may be a more acceptable term as it suggests a collaborative process of decision-making regarding medications regimes and acknowledges the importance of the two-way communication. The NHS Plan (2000) emphasises the importance of placing patients at the centre of services and the transformation of patients into consumers of the health service has changed the context of health care, as patients are expected to become more active and informed about their treatments (Jasper, 2006). Murray et al (2007) emphasise that shared decision-making between clinicians and patients has the potential to improve concordance with treatment plans. Furthermore, The Chief Nursing Officer’s review of mental health nursing (2006) recommends that building and maintaining positive interpersonal relationships with service users is essential to successful mental health nursing practice and person-centred values is helpful in building positive relationships.
This indicates that by not agreeing to health professionals’ advice patients may be labelled as non-compliant. Nonetheless, compliance could also be problematic, for example if patients continue to take medication obediently, although it is causing adverse side effects. However, from the empirical knowledge the term compliance is still being used in clinical settings despite the paternalistic conception. Therefore, the term concordance is favoured here as it promotes the idea that medication treatment should be a collaborative process between clinicians and patients, which emphasises the patients’ rights. Ultimately, the term concordance corresponds with the current ethos of modern mental health care set out in the National Service Framework (1999), the NHS Plan (2000) and the Chief Nursing Officer’s review of mental health nursing (2006), which is concerned with working in partnership with patients and carers. However, according to the term concordance patients have the right to make treatment decisions, for example, stopping medication even if health professionals do not agree with that decision.
For decades researchers have worked to explain the causes of non-concordance with medication unfortunately there have been no valid way of measuring concordance (Velligan et al, 2006). Rates of concordance have been measured by using the subjective and objective methods. Subjective method includes patients` self report and direct interviews, although this method is less expensive, it tends to overestimate the degree of concordance, as patients may not admit non-concordance (Gray et al, 2002b). Snelgrove (2005) claims that objective method such as blood and urine analysis also pose problems as they do not account for individual metabolism and do not reflect inconsistencies in concordance over time. Moreover, from empirical knowledge blood test is effective in monitoring concordance with mood stabilisers such as lithium, but for schizophrenia it is the manifestation of symptoms can support the evidence of non-concordance. According to Gray et al (2002b) pill counts are more reliable, but it is impossible to tell whether patients have actually ingested the medication. Even expensive objective method such as electronic monitoring which records every occasion that a pill bottles is opened can also be problematic when patients choose not to swallow the medication that was removed or do not replace the caps and electronic prescribing is still fallible, just because medication is available does not mean that it is taken (Velligan et al, 2006).
One of the major clinical problems in the treatment of people with schizophrenia is partial or complete non-concordance with medication and this limits the clinical effectiveness of the prescribed medications (Kikkert et al, 2006). Antipsychotics medication can only be effective if they are taken continuously over a sustained period of time (Norman & Ryrie, 2004). Urquhart (2005) claims that partially concordant patients can be difficult to identify because they do not actively refuse to take their medication but the dosage deviations for different reasons and this may only be detected when psychotic symptoms re-emerge. Partial concordance creates significant problems for the treating physician as it creates difficulties in determining whether medications are working adequately, dosing is appropriate or concomitant medication is needed (Velligan et al, 2006). Therefore, this indicates that medication or dosage changes and the addition of concomitant medications are more likely to occur among patients who are not fully concordant with prescribed medications.
Non-concordance with prescribed medication is believed to be a significant factor to increasethe probability of relapse in patients with schizophrenia and relapse is one of the most costly aspects of schizophrenia (Almond et al, 2004). Knapp et al (2004) undertook a study of 658 patients receiving antipsychotics medication of whom 20% reported non-concordance with prescribed medication and concluded that non-concordance was one of the most significant factors in increasing service costs, predicting an excess annual cost per patient of £2500 for inpatient services and an overall additional cost of £5000 for total service use. In addition, Almond et al (2004) estimated that costs for relapse cases are four times higherthan those for non-relapse cases. Therefore, these two studies show that relapse in patients with schizophrenia as a result of non-concordance isa major factor in generating high hospitalisation rates and costs. This implies that patients who do not concord with their medication are likely to requiremore treatment and support from a range of services and given the high costs associated with relapse non-concordance is a key factor in the use ofin-patient and external services.
Antipsychotic medication has proven efficacy in the treatment of schizophrenia and the prevention of relapse. In spite of vast evidence that antipsychotics can be effective in treating the symptoms of schizophrenia, almost 90% of patients will relapse within the first five years of treatment following an acute episode and in general the illness has a tendency to recur or become chronic (Velligan et al, 2006). According to White et al (2007) non-concordance with drug therapy is common in schizophrenia; approximately 50% of patients are non-concordant within one year and 75% within two years after being discharged from hospital. Such high rates of non-concordance with medication may initially seem alarming (Gray et al, 2002b). However, it is similar with other conditions such as asthma where maintenance treatment is required. A study of concordance with asthma medication conducted by Newell (2006) estimated that 70 % of asthma patients in the UK are non-concordant with medication and the levels of non-concordance in long-term conditions, such as asthma are known to be high as many asthma sufferers will only take medicine when they feel they need it rather than as instructed by clinicians. Therefore, considering the Newell (2006) findings it can be argued that the rates of non-concordance with antipsychotics are not significantly different than those on non-psychiatric medications and the myth that non-concordance with medication is more common among mental disorders as compared to physical disorders needs to be dispelled.
Several factors have been shown to increase the chance of relapse but probably the single most important cause of relapse is the discontinuation of effective antipsychotic medication regime. A large number of factors influence non-concordance with prescribed antipsychotic medications, however Gray et al (2002b) have identified the main factors as impaired judgement, negative beliefs about treatment, poor worker-user relationship and the side-effects of medication. Additionally, Kikkert et al (2006) conducted a study in four European countries exploring medication adherence in schizophrenia and identified insight, beliefs about treatment, side effects and treatment efficacy as factors that influence concordancewith medication in patients with schizophrenia.
Urquhart (2005) suggests that the problem of non-concordance may be more prevalent among those with schizophrenia due to its nature, for example, lack of insight. Magorrian (2007) claimed that non-concordance with medication is often linked to the person’s level of insight into his or her illness and lack of insight is a frequent concomitant of psychosis. In schizophrenia, insight has been defined as an awareness of illness and an ability to recognise symptoms as part of an illness (Gray et al, 2002b)
According to Surguladze & David (1999) between 50% and 80% of patients diagnosed with schizophrenia have been shown to be partially or totally lacking insight into the presence of their mental disorder and these individuals are often difficult to engage with treatments due to impaired insight. Recent conceptualisation has formulated insight as a continuum representing the combination of three factors; awareness of illness, need for treatment and attribution of symptoms. Lack of insight is continuously problematic but an emotional element can be associated with denial of symptoms or rejection of treatment at key points in the illness (Byrne, 2000). Mitchell & Selmes (2007) claim that having a perception about the illness and the knowledge of medications are the key factors of concordance in mental health and patients who understand the purpose of the prescription are twice more likely to collect it than those who do not understand.
A study by Cuesta et al (2000) reported that patients suffering from schizophreniashowed poorer insight than patients with affective disorders. Cuesta et al (2000) findings demonstrated that the severe disturbances of insight persisted over the time and the level of insight was not significantly improved in patients suffering from functional psychosis as between 29% to 49% of these patients continued to have fair to poor insight at the follow up assessment. This is consistent with the findings of Kikkert et al (2006), where poor insight was a strong predictor of non-concordance with medication. In contrast, Tait et al (2003) conducted a study to examine changes in insight and symptoms of psychosis on fifty participantswho met the ICD—10 diagnostic criteria for schizophrenia. The participants were interviewed and insight was measured duringacute psychosis using the Insight Scale with the score 0- 12 and all the participants were reinterviewed at 3 and6 months following the initial interview. Tait et al (2003) findings indicated that duringthe acute episode, 48% of participants scored 9-12 on the InsightScale and the majority of participants (63%) werein the 9-12 range of scores. The study of Tait et al (2003) clearly indicated that level of insight was high among many participants.
In considering the findings of both Cuesta et al (2000) and Tait et al (2003) it appears that some patients with psychosis are unaware of their illnesses and insight is a strong predictor of concordance with medications and a good indicator of prognosis. However, evidence for a relationship between insight and concordance with treatment is inconclusive as the discrepancies found between the two studies might be due to the methodological factors, such as selection of participants. In both studies all the participants had a diagnosis of schizophrenia and all of them gave informed consent to enter the study. According to Appelbaum (2006) several studies in America regarding the decisional-capacity of patients with schizophrenia to consent or participation to research have raise some concerns due to the cognitive impairments associated with schizophrenia and using the MacArthur Competence Assessment Tool for Clinical Research clearly indicated that patients with schizophrenia do lack understanding and reasoning of research ethics.
McCann & Clark (2005) emphasise that antipsychotic medications some of which have a sedating effect can also have an impact on the cognitive processes, such as illogical thinking and this can hinder the quality of responses.
Moser et al (2005) argued that some studies have shown that a high percentage of individuals with schizophrenia have adequate decisional capacity to consent to research participation, however in a medication-free schizophrenia research, participants did not show a major decline in decisional capacity. In addition, Jeste et al (2006) claimed that there is a risk in assuming that decision-making capacity of individuals with schizophrenia is always impaired, when they are capable to make autonomous decisions and in considering their decision-making capacity as permanently impaired by virtue of their diagnosis. Consequently, in order to investigate factors associated with schizophrenia, it can be argued that only individuals with schizophrenia can provide the answers of their experiences and protecting vulnerable populations from research activity can also exclude them from its benefits.
According to Gerrish & Lacey (2006) there two key concepts that concern the quality of a research: validity and reliability. Roberts et al (2006) define reliability as how far a particular test will produce similar results in different circumstances, whereas validity is to ascertain the methods are actually measuring what is intended to measure. Both Cuesta et al (2000) and Tait et al (2003) had used structured interviews to gather the data and have chosen a quantitative approach. Structured interview provides the opportunities to change the words but not the meaning of the questions thus, Parahoo (2006) claimed that validity is enhanced because participants can be helped to understand the questions and interviewers can ask for clarifications and probe for further responses, if necessary and since all the questions are ideally asked in the same way, structured interview has a high degree of reliability.
It seems that both Cuesta et al (2000) and Tait et al (2003) have adopted the appropriate approach to their research, as quantitative research is the conduct of investigations primarily using numerical methods. It infers that to examine correlations between insight and service engagement qualitative approach could not have produced the same data in this area of study. Moreover, in both studies purposive sampling were used as all the participants had a diagnosis of schizophrenia. According to Polit & Beck (2006) all participants in a phenomenological study must have experienced the phenomenon under study and must be able to articulate what is like to have lived the experience.
Johnson & Orrell (1996 cited in Surguladze & David, 1999 P 166) have argued that some patients may have their own explanations of their illnesses, such as religion or cultural beliefs which may not coincide with the Western medical model of mental disorders and this can be even more complicated if one tries directly to impose the models of insight on patients from non-Western cultures. Gamble & Brennan (2006) claimed that different cultures in England perceive mental illness in different ways and this can have an impact on treatments as some cultures rather seek help from religious leaders than mental health services. Alternatively, religion or spiritual beliefs in the Western culture can have a positive impact on concordance with medication, as religious individuals with schizophrenia have a better social support compare to non-religious individuals with schizophrenia (Borras et al, 2007). Therefore, it can be put forward that awareness of illness is a crucial factor in the motivation to receive pharmacological treatment. Both cultures and religion can have a positive and negative influence on concordance with antipsychotics.
Patients can have different levels of awareness into their illness and they may consciously or unconsciously avoid acknowledging that they are suffering from mental health problems because of their reluctance to bear the stigma of mentally ill (Surguladze & David, 1999). Byrne (2000, p65) defined `stigma as a sign of disgrace or discredit, which sets a person apart from others and the stigma of mental illness although more often related to context than to a person’s appearance, remains a powerful negative attribute in all-social relations`. Stigma of mental illness has become an indication for unpleasant experiences, such as bringing shame to the family or social exclusion. According to Phillips et al (2002), in some parts of china, schizophrenia is still considered as a punishmentfor an ancestor’s misbehaviour or for the family’s currentmisconduct and the effect of stigmais greater if the patient had more prominent positive symptoms or highly educated. Moreover, a study by Lee et al (2005) concluded that 60 % out of 320 patients with schizophrenia had experienced interpersonal stigma from p arents, siblings or close rel atives. This indicates that people with schizophrenia are more likely to experience stigma from family members than the general public.
Having a diagnosis of schizophrenia does not only affect one’s health but also carries all the prejudice, discrimination and social exclusion, for example many individuals are attacked on the streets, rejection in the society and denial of employments because they were known to have mental health problems (Gamble & Brennan, 2006). According to Byrne (2000) in two identical UK public opinion surveys, 80% of participants claimed that most people are embarrassed by mentally ill people and about 30% agreeing `I am embarrassed by mentally ill persons`.
There is also evidence that supports the concepts of stereotyping of mental illness. The power and influence of the media on mental illness has been a key issue of debate over many years as people with schizophrenia are frequently portrayed as violent and dangerous. In contrast, people with schizophrenia are more likely to be dangerous to themselves than to others, while the greater danger to the public is posed by people without mental health problems and people with mental health problems are six times more likely than the general public to be the victims of murder (Stickley & Felton, 2006). Moreover, Gamble & Brennan (2006) claimed that when the boxing champion Frank Bruno was admitted to hospital in 2003, one of the newspaper headlines was `Bonkers Bruno locked up`. This indicates that stigma has the grave potential to cause reluctance to seek treatments and this can be detrimental to the person’s health. Therefore, as a mental health clinician, it will be vital to assist people with mental health problems to rebuild their lives and this requires moving beyond the traditional focus on symptoms and medication by exploring alternatives in reducing stigma of mental health that avert people from social inclusion.
It has been predicted that families with high expressed emotion compared to low expressed emotion can contribute towards the relapse rate in symptoms of schizophrenia and this can also be a triggering factor for non-concordance with medication. High expressed emotion carers appear to perceive their caring situation as more stressful and this could be conceptualised as a catastrophic appraisal of the role of caring (Raune et al 2004). Kuipers et al (2006) identifies the components of expressed emotion as emotional over-involvement, hostility, critical comments, warmth and positive remarks. A study by Kuipers et al (2006) indicates that patients whose carers showed high expressed emotion had considerably higher levels of anxiety and lower self-esteem due to the components of expressed emotion. However, a significant amount of data from western cultures suggests that high expressed emotion subjects who were not on medication are three times likely to relapse than those who were on medication (Bhugra & McKenzie, 2003). This clearly signifies that despite being concordant, high expressed emotion subjects are vulnerable to relapse.
The interactions between patient and the carers are crucial, especially cross-culturally as in some cultures for example, in some parts of India, emotional over-involvement is the norm and if carers do not show emotional over-involvement, this can be seen as lack of care (Bhugra & McKenzie, 2003). Hashemi & Cochrane (1999) conducted a study in UK on expressed emotion and they observed that 80% of the British Pakistani, 45% of the White and 30% of the British Sikh families exhibited high levels of expressed emotion and emotional over-involvement was notably higher among the British Pakistani group. The findings concluded that White patients with high expressed emotion relatives were significantly more likely to relapse than those from low expressed emotion families, whereas for both Asian groups high expressed emotion did not predict relapse.
The study of Hashemi & Cochrane (1999) also indicated that that Pakistani families in the UK were more likely to be rated as high expressed emotion than White families, indicating that components such as emotional over-involvement may be cultural rather than pathogenic traits. Conversely, low expressed emotion families who are not over-anxious in their response to the patient’s illness may tend to perceive stigma in less threatening ways whereas, families with high expressed emotion, who respond to the patient’s illness in a highly anxious may experience stigma more intensely (Phillips et al 2002). Therefore, it appears that family members’ levels of expressed emotion could influence their perception and response to stigma of mental health and concordance with medication is essential for patients irrespective of the expressed emotion status in the family. Thus, family interventions need to improve in order to lower the levels of anxiety and to increase self-esteem among families with high expressed emotion. As a clinician it will be vital to acknowledge the cultural aspect of expressed emotion status in the family to facilitate concordance with medication.
There is overwhelming evidence for patients with schizophrenia, who misuse illicit drugs and alcohol to have an increased rate of re-hospitalisation (Sokya, 2000). According to Barnes et al (2006) the higher relapse rate in people with established schizophrenia who usesubstances may be partially explained by non-concordant tothe medication regimen. Evidence suggests that the substance used most frequently by people with schizophrenia is cannabis (Gamble & Brennan, 2006). Arseneault et al (2004) emphasise that rates of cannabis use in UK are higher among people with schizophrenia than among the general population and patients detained under the MHA (1983) have even higher rates of lifetime use of cannabis. Substance misuse in schizophrenia may be explained as a form of self-medication to alleviate the symptoms of schizophrenia, to improve the side effects of antipsychotics and to respond to social pressures (Sokya, 2000).
There has been little evidence to support the self-medication hypothesis despite its popularity with users and in contrast, substance misuse can aggravate the symptoms of schizophrenia and can also trigger psychotic episode particularly in people with a pre-exis