The impact of negative treatment experiences on persistent refusal of antipsychotics
Introduction
As a rule, and in line with guideline recommendations across the globe [1], [2], [3], antipsychotics are offered to patients with psychosis as a first line treatment. Interestingly though, about half of the patients are non-adherent to this type of treatment, with non-adherence defined as not taking medication as prescribed for at least 75% of the time [4]. The majority of non-adherent patients are only partially non-adherent — and this group has been well-studied [5], [6]. However, about 20% of the patients with schizophrenia spectrum disorders refuse medication, either initially with later consent, or intermittently, or consistently, with or without an initial phase of adherence [7], [8], [9]. Several studies have investigated initial refusal or intermittent refusal during inpatient stay [7], but very little attempt has been made to understand the group of so-called ‘consistent’ [10] or ‘persistent’ refusers who do not take medication over a longer period of time [8], [11]. At the same time, the health-care system has increasingly recognized the need to elicit the views of its users and several government reports have recommended that the health service should be more responsive to consumer opinion [12]. Understanding the motives of people with psychotic disorders who consistently refuse medication can provide a basis to reflect on the limitations of currently available treatments for this group, develop alternatives, and facilitate collaborative decision making as recommended by the NICE guidelines [1].
There are numerous plausible reasons for refusing medication. The one most prominently investigated is a lack of so-called “insight”, which has consensually been defined as awareness of having a mental disorder and of its symptoms and – in the broader definitions – of its implications and need for treatment [13], [14], [15]. Thus, to be described as having high insight a person with psychotic experiences needs to label his or her experiences as symptoms and attribute them to having a mental illness, which also involves generally adhering to an illness model of mental health. Not having insight, as defined in this way, is a likely barrier to accepting medication. This is consistently supported in the literature on partial non-adherence which shows lower insight to be associated with negative attitudes about medication and lower medication adherence [4], [13], [16], [17], [18].
However, it also seems that reducing the reasons for medication refusal to a lack of insight may be explaining it away too easily. Some patients have insight into having a mental disorder but see the causes of the disorder in primarily psycho-social factors [19]. As has been shown, the less patients believe that their symptoms arise from a chemical imbalance in the brain the more they need to be convinced that medication is going to help them [20], [21]. Vice versa, patients who note biological rather than social causes are more likely to say that they were receiving the right treatment [22].
Furthermore, having been well-informed by the treating psychiatrist [23] and a good therapeutic relationship are likely to increase adherence [4], [16], [24], [25], [26]. Negative previous experiences with medication, such as non-response [27] or severe side effects [28] are also likely to influence the decision of whether to accept medication as does a generalized critical attitude towards medication [4], [29], [30]. Finally, patients with higher symptom distress might be more motivated to take medication, although findings on this matter have been inconclusive [4]. Rather than being distressed by symptoms, some patients perceive their symptoms in a positive manner [31], [32] and this has also been found to be relevant to medication non-adherence [33], [34].
Taken together, the decision not to take medication might thus not only be due to a lack of “insight”, but could also be the result of a rational decision after weighing up the pros (e.g., relief from distressing acute positive symptoms) with the cons (e.g., distressing side effects, unknown long-term side effects, past non-response, positive beliefs about symptoms) as described in the Health Belief Model [35], [36] which was developed to explain general health behavior by evaluative processes and has received some support in relation to attitudes related to non-adherence in psychosis [20].
Naturally, the balance of pros and cons will vary from person to person. For example, in a patient with less symptom distress but more severe side effects the cons are more likely to outweigh the pros than in a patient who felt severely distressed by psychosis and has responded well to medication. In the former case, not taking medication would reflect a rational decision.
None of the literature cited so far, however, stems from studies on consistent non-adherence, which are scarce. In a review of 22 articles investigating reasons for medication refusal in psychiatric patients during acute inpatient treatment, Owiti and Bowers [7] found more delusions, higher doses of medication, more negative attitudes towards medication, and poorer relationships to medical staff in the group of refusers, which seems to support many of the assumed reasons for refusal. However, in acute patients delusions and lack of “insight” are likely to play a larger role, while experience-based and more deliberated decisions may be more prevalent among persistently refusing outpatients. To our knowledge, only one study investigated characteristics of patients who refused over a longer period of time [8]. This study included 114 (18.8%) patients from a first-episode cohort of 605 patients who were part of an early-intervention service. Persistent medication refusal was defined as refusing fairly consistently over an 18-month period despite clinician estimated need of medication. Among other differences, this study found persistent refusers to be characterized by lower premorbid functioning, a longer period of untreated psychosis, a history of physical abuse, fewer years of education, more substance use and dependency as well as lower insight compared to those with full adherence. Similar to the review by Owiti and Bowers [7] these findings indicate that the refusers are more severely impaired and less likely to be making rational decisions. However, the study does not represent outpatients who decide to refuse after a phase of initial stabilization and was not able to take into account the impact of previous treatment experiences.
The present study investigated the potential reasons outlined above for persistently refusing medication by comparing persistent outpatient medication refusers to outpatients taking medication. We expected that the refusers will be characterized by less “insight”, less symptom-related distress, a more positive view of symptoms and their consequences, a less biological model of the causes of their symptoms, less satisfaction with previous treatment attempts with medication, a more negative evaluation of the treating psychiatrist, feeling poorly informed about medication, and more critical attitudes towards medication in general. If the decision not to take medication is driven, at least in part, by a rational decision about its costs and benefits that is independent of insight, we expected to find that factors that speak for a rational decision, such as previous negative experiences with medication or perceiving less symptom distress, will predict whether a person has decided not to take medication — even after taking differences in insight into account.
Section snippets
Procedure
The study was conducted at the University of Marburg and the University of Hamburg. Participants were recruited via advertisements in local newspapers and bulletin boards in public spaces as well as on nonprofit internet platforms on psychotic disorders and in two regional outpatient clinics. Several different versions of adverts were used in order to recruit a spectrum of patients, including those that would or would not relate their experiences to a mental disorder and the label of psychosis.
Sample characteristics
After exclusion of three participants who – despite reporting sub-clinical delusions or hallucinations in the telephone screening – did not meet the diagnostic criteria for a psychotic disorder, and three participants who had never seen a psychiatrist and had never been offered AM and thus cannot be considered as refusers, the sample consisted of 45 participants (25 with and 20 without medication). Of these, 33 participants fulfilled DSM-IV criteria for schizophrenia, 11 for schizoaffective
Reasons for persistent refusal
This study sought to identify potential reasons for persistently refusing medication by comparing persistent outpatient medication refusers to outpatients taking medication. The majority of variables that distinguished between the groups in the univariate analyses were ones related to negative experiences with previous treatment and medication, such as the satisfaction with the therapeutic relationships and treatments, perceiving medication as having been unhelpful or harmful, and not having
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2021, Psychiatry ResearchCitation Excerpt :This can be inferred from the manifold motives patients have provided for self-initiated discontinuation of antipsychotics. Among others, these include (1) the desire to feel self-efficient rather than dependent on a drug (Brown et al., 2005; Chakraborty et al., 2009), (2) hoping to reduce the risk of negative long-term effects (DiBonaventura et al., 2012; Beck et al., 2011; Lincoln et al., 2016) and (3) wanting to get rid of unwanted side effects (DiBonaventura et al., 2012; De las Cuevas et al., 2014) along with the dampening of perceptions, feelings and creativity (Chakraborty et al., 2009; Moritz et al., 2013). A subgroup of patients with psychotic disorders even appreciate the presence of psychotic symptoms and do not wish for them to be entirely subdued (Moritz et al., 2013).
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2020, Schizophrenia ResearchCitation Excerpt :It should also be considered that some interventions may be effective in one domain but detrimental in others. Traditionally, pharmacotherapy has been used to treat positive symptoms; however, medication side effects may be associated with detrimental emotional effects (Lincoln et al., 2016), which based on the current results would be expected to adversely affect functioning and personal recovery. Similarly, trauma focused psychotherapies may improve personal recovery but initially worsen symptoms (Tong et al., 2017).
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2019, Clinical Psychology ReviewCitation Excerpt :Further, better client-rated alliance with one's clinician was significantly associated with increased odds of better medication adherence among those receiving community mental health services (McCabe et al., 2012). Lincoln et al. (2016) examined relationships between alliance and medication refusal and found that clients who had refused antipsychotic medication for at least three months had significantly lower client-rated alliance with their psychiatrist than those who had taken antipsychotic medication for at least three months. A cross-sectional study showed that client-rated alliance with one's clinician enhanced illness representation (i.e., beliefs and understanding of one's illness), which led to an intention to change adherence behavior (Rungruangsiripan, Sitthimongkol, Maneesriwongul, Talley, & Vorapongsathorn, 2011).
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2019, Schizophrenia ResearchCitation Excerpt :Another recent systematic review and meta-analysis has found encouraging results for shared decision making interventions to improve ability to be meaningfully involved in decisions about treatment (Stovell et al., 2016). A study examining decisions about antipsychotics in people with schizophrenia-spectrum disorders found that refusing medication after a phase of initial adherence was often the consequence of negative experiences with medication and often results from a rational weighing up of the risks against the benefits (Lincoln et al., 2016). Therefore, if people with psychosis choose not to take antipsychotic medication, it is important to have evidence-based alternatives available to them, so an increased emphasis on dissemination and implementation, especially outside the UK, is required.
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