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Experiencing Antipsychotic Medication: From First Prescriptions to Attempted Discontinuation

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Antipsychotic medications (AM) are the designated first-line intervention for psychosis in international best-practice guidelines and are prescribed for a range of other mental-health problems. Relatively little is known about how people subjectively experience AMs and attempted discontinuation or about the role psycho-social factors play in recovery outcomes. This research explores how people experience AMs, use psycho-social strategies and, where relevant, manage discontinuation. An anonymous online survey was completed by 144 New Zealand adults who had ever taken oral AMs for any reason for more than 3 months. Seven in-depth interviews were conducted to explore experiences of people who had discontinued AMs for over one year. In Study One, survey participants reported a range of diagnoses including schizophrenia spectrum disorders, bipolar disorder, and depression. Half described a primarily negative first prescription experience. Other treatment options were rarely offered at first prescription but were nevertheless used by many. Few people reported being well-informed of the potential benefits and risks. Descriptions of taking AMs ranged from “life-saver” and “useful tool” to “mixed bag” and “hell”. Most experienced both benefits and adverse effects. Most (79%) had contemplated stopping AMs, and 73% reported making at least one attempt, with variable preparations, methods and outcomes described. Hierarchical multiple regression suggested social support, active coping and avoidant coping were independently predictive of quality of life but current use of AMs was not. In Study Two, the interviewees revealed that maintaining wellbeing during and after withdrawal from AMs was primarily a function of coming to understand themselves and their needs, connecting with supports, and finding strategies that worked for them, which included accepting symptoms and signs of distress. Conclusions include that AMs can be experienced as crucial lifesavers, useful tools with drawbacks and/or destructive forces to endure or escape. Attempted discontinuation is common and some people succeed in their efforts to stop, although withdrawal can be risky and is often poorly supported. Multiple psycho-social strategies are helpful additions or alternatives to AMs. Since quality of life is associated with coping and social support, treatment systems cannot rely solely on medication to produce positive outcomes for those who take AMs.
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... Even if people do not succeed in stopping neuroleptics altogether, attempting to discontinue can be worthwhile by leading to lower doses and reduced adverse effects. 53 Addressing the reasons why relapse is feared so intently by all parties is also important. Relapse prevention planning with detailed contingency arrangements to intervene with early signs of relapse may help to allay patients' and relatives' fears, as well as close monitoring and access to help and advice in between scheduled appointments. ...
... People report using a variety of coping mechanisms to prepare for, and endure a period of, withdrawal including psychological, behavioural and medication-based strategies. 46,47,53,67 People also seek support from a variety of sources, including clinicians, friends and personal journals.sagepub.com/home/tpp 7 acquaintances. ...
... 51,72,73 These and other sources suggest that a flexible approach, involving continual self-reflection and adjustment of the tapering plan according to the individual experience of withdrawal is most likely to be successful and acceptable. 53 Official guidance based on this experience would encourage clinicians to support people who wish to try and stop their neuroleptic medication. NICE is currently developing guidelines for stopping benzodiazepines, opiates and antidepressant drugs, and it is to be hoped that NICE, or a similar institution, will take up the challenge of providing guidelines for the withdrawal of neuroleptics in the future. ...
Article
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Most guidelines recommend long-term, indefinite neuroleptic (or antipsychotic) treatment for people with schizophrenia, recurrent psychosis or bipolar disorder, on the basis that these medications reduce the chance of relapse. However, neuroleptics have significant adverse effects, including sexual dysfunction, emotional blunting, metabolic disturbance and brain shrinkage, and patients often request to stop them. Evidence for the benefits of long-term treatment is also not as robust as generally thought. Short-term randomised trials show higher rates of relapse among those whose neuroleptic treatment is discontinued compared with those on maintenance treatment, but they are confounded by adverse effects associated with the withdrawal of established medication. Some longer-term studies show possible advantages of medication reduction and discontinuation in terms of improved social functioning and recovery. Therefore, there is a good rationale for supporting patients who wish to stop their medication, especially given the patient choice agenda favoured by The National Institute for Clinical Excellence (NICE). The major barrier to stopping antipsychotics is an understandable fear of relapse among patients, their families and clinicians. Institutional structures also prioritise short-term stability over possible long-term improvements. The risk of relapse may be mitigated by more gradual reduction of medication, but further research is needed on this. Psychosocial support for patients during the process of reducing medication may also be useful, particularly to enhance coping skills. Guidelines to summarise evidence on ways to reduce medication would be useful. Many patients want to try and stop neuroleptic medication for good reasons, and psychiatrists can help to make this a realistic option by supporting people to do it as safely as possible, with the best chance of a positive outcome.
... Although most research on medication management has implicitly taken adherence to prescribed regimen as the norm, work is needed to fill the knowledge gap on how to support people when they choose to discontinue. Such information not only could limit risks associated with longterm use but also would align with principles emphasizing service user choice and self-determination (5,6), which have been associated with improved outcomes and treatment engagement (7). Because individuals frequently choose to stop taking psychiatric medication (3,4), service users, their families, and providers must have the information they need to maximize safety during discontinuation while avoiding treatment dropout and isolation. ...
... Previous studies of individuals who discontinue medication are generally limited to a single class of medication (3,5,6), with most participants using medication for less than six months (2). Landmark clinical trials of psychiatric drug treatments for psychosis, depression, and bipolar disorder have found discontinuation rates as high as 74% (8)(9)(10). ...
... Furthermore, our findings describe the experiences of individuals discontinuing various classes of psychiatric medication; thus these experiences cannot be generalized across drug classes. Initial studies have documented the withdrawal effects of various classes of drugs (5,6,13,34). We plan to address this problem in a more complete exploration of withdrawal effects in this sample. ...
Experiment Findings
The dataset for the Psychiatric Medication Discontinuation and Reduction Study is now freely available through Open ICPSR (Inter-university Consortium for Political and Social Research). You can download the data, the codebook, and the survey here: https://www.openicpsr.org/openicpsr/project/109272/version/V1/view/
... 3 anonymous online survey exploring oral antipsychotic experiences among New Zealand residents aged 18 or older who had taken antipsychotics continuously for at least 3 months for any reason and were currently living in the community. 6 Survey participants (n = 144) who had attempted discontinuation (n = 105) and remained off antipsychotics for 1 year or more (n = 52) were presented with an invitation to take part in an interview about what had enabled them to maintain their wellbeing during and after withdrawal. People who expressed an interest in being interviewed had an opportunity to ask questions before providing written consent to take part and completed a confidential screening questionnaire to establish that they were not currently taking oral or depot antipsychotics, had not taken them on a daily basis for at least 1 year, and considered themselves well at the time of the interview. ...
... Thematic analysis was used to identify semantic patterns within participant descriptions of maintaining their wellbeing during and after withdrawal from antipsychotics, following the six-step process outlined by Braun and Clarke. 54 This was initially carried out several years ago as part of a larger doctoral study 6 and was further reviewed and refined for the purposes of strengthening the results for publication. Only references to the process of maintaining mental health during and after withdrawal were selected for thematic analysis. ...
Article
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Background: It is well-known that attempting antipsychotic withdrawal can be a fraught process, with a high risk of relapse that often leads people to resume the medication. Nonetheless, there is a group of people who appear to be able to discontinue successfully. Relatively little is known about how people do this. Methods: A convenience sample of adults who had stopped taking antipsychotic medication for more than a year were recruited to participate in semi-structured interviews through an anonymous online survey that investigated antipsychotic medication experiences in New Zealand. Thematic analysis explored participant descriptions of their efforts to maintain their wellbeing during and after the withdrawal process. Results: Of the seven women who volunteered to participate, six reported bipolar disorder diagnoses and one reported diagnoses of obsessive compulsive disorder and depression. The women reported successfully discontinuing antipsychotics for 1.25–25 years; six followed a gradual withdrawal method and had support to prepare for and manage this. Participants defined wellbeing in terms of their ability to manage the impact of any difficulties faced rather than their ability to prevent them entirely, and saw this as something that evolved over time. They described managing the process and maintaining their wellbeing afterwards by ‘understanding myself and my needs’, ‘finding what works for me’ and ‘connecting with support’. Sub-themes expand on the way in which they did this. For example, ‘finding what works for me’ included using a tool-box of strategies to flexibly meet their needs, practicing acceptance, drawing on persistence and curiosity and creating positive life experiences. Conclusion: This is a small, qualitative study and results should be interpreted with caution. This sample shows it is possible for people who experience mania and psychosis to successfully discontinue antipsychotics and safely manage the impact of any symptoms that emerge as a result of the withdrawal process or other life stressors that arise afterwards. Findings suggest internal resources and systemic factors play a role in the outcomes observed among people who attempt to stop taking antipsychotics and a preoccupation with avoiding relapse may be counterproductive to these efforts. Professionals can play a valuable role in facilitating change. Free full text at https://journals.sagepub.com/doi/10.1177/2045125321989133
... This study is based on responses to selected questions in The Experiences of Antipsychotic Medication Survey concerning people's efforts to manage attempted discontinuation of AMs. The anonymous survey was available for online completion in 2014 [23]. Ethical approval for the study was granted by the University of Auckland Human Participants Ethics Committee. ...
... In addition, the nature of the coping strategies people used, the preparations they made, and the guidance they received through consulting a doctor may be more influential than whether any effort was made at all. For instance, avoidant and active or approach-focused coping strategies have been shown to have different effects on a range of measures of well-being when they are used habitually [38], and to bear divergent predictive relationships with QOL, both among those who take AMs and those who have stopped taking them [23]. People in this study described using a range of active, or approach-focused, coping strategies involved in self-care, self-soothing, expression, physical health, and help-seeking, as well as a range of avoidant coping strategies such as distraction, and isolation, which would conceivably have quite different effects on their internal experiences and the consequences of the withdrawal effects they face. ...
Article
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Purpose: To explore supports and coping strategies used during attempts to discontinue antipsychotic medication and test for associations with success. Method: 144 people who were taking or had taken antipsychotics completed The Experiences of Antipsychotic Medication Survey. Among them, 105 people had made at least one discontinuation attempt and answered a series of questions about their most recent attempt to stop. Content analysis and Chi-square tests of independence were used to categorise the data and explore associations. Success was defined as stopping all AM use irrespective of the duration of the medication-free period or whether relapse occurred, which were explored separately. Results: Among the 105 people who had attempted discontinuation, 61.9% described unwanted withdrawal effects and 27.6% of the group described psychotic or manic relapse during the withdrawal period. Within this group 55% described successfully stopping all AM for varying lengths of time, half reported no current use, and half described having some form of professional, family, friend, and/or service user or peer support for their attempt. Having support was positively associated with success and negatively associated with both current use, and relapse during withdrawal. A range of coping efforts were described, but having coping strategies failed to show significant associations with any of the dependent variables explored. Among those who described successfully stopping, some described returning to AM for short periods when needed, while others reported managing well with alternative methods alone. Conclusions: Findings cannot be readily generalised due to sampling constraints, but results suggest a wide range of supports and coping strategies may be used when attempting to discontinue antipsychotics. Many people may attempt to discontinue antipsychotics without any support. Those who have support for their attempts may be significantly less likely to relapse during withdrawal and more likely to succeed in their attempt. There is a pressing need for further research in this area.
... At long-term follow-up after basal exposure therapy, those patients who chose to reduce their use of psychotropic drugs and gradually became drug free, showed better psychosocial functioning than those who were still using psychotropic drugs. Some patients in mental health care wish to become drug-free after long-term use of psychotropic drugs (1)(2)(3). In Norway, the hospital trusts have been ordered to establish drugfree therapeutic programmes (4). ...
... The patient's motivation to withdraw the use of drugs is described as a key factor for successful discontinuation, and active participation in the withdrawal process may reinforce the opportunities for functional improvement over time (2,15). Those who continued to use psychotropic drugs may have experienced unpleasant withdrawal symptoms and may have resisted gradual withdrawal for this reason. ...
Article
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BACKGROUND Vestre Viken Hospital Trust provides basal exposure therapy to inpatients with complex mental disorders and low level of functioning. This therapy provides help to those who wish to become drug-free. The key element of this therapy involves exposure to unwanted internal experiences, referred to as existential catastrophe anxiety. We examined the patients’ psychosocial functioning at least two years after completion of the inpatient therapy. MATERIAL AND METHOD Data were available for 33 of 36 discharged patients. We registered their use of psychotropic drugs, level of symptoms and functioning (Global Assessment of Functioning, GAF), level of education and ability to work and live at home unaided at the time of admission and the time of follow-up, as well as admissions during the year preceding the admission and follow-up. The degree of exposure was scored upon discharge. RESULTS At the time of follow-up (at 5.3 years on average), altogether 16 persons were drug-free, while 17 were still using psychotropic drugs. The average GAF score in the drug-free group was approximately 65, equivalent to mild symptoms and moderate social challenges. In the group that used psychotropic drugs, the average GAF score was approximately 41, which is indicative of serious problems and need for therapy. Four of the drug-free patients and 13 of the psychotropic drug users had been readmitted during the year preceding the follow-up, and nine patients and one patient respectively were employed in at least 50 per cent FTE. Drug-free patients with a high degree of exposure had the best social functioning score. Those seven who achieved full recovery were all drug-free. INTERPRETATION At long-term follow-up after basal exposure therapy, those patients who chose to reduce their use of psychotropic drugs and gradually became drug free, showed better psychosocial functioning than those who were still using psychotropic drugs.
... For example, qualitative studies of intervention often allow individuals to define effectiveness for themselves. Larsen-Barr's analysis of the subjective experience of taking and quitting antipsychotics is a case in point, 1 3 revealing wide variations in success and insight into a range of reasons people find the drugs helpful or hellish [38]. However, the generally recognized limitations of qualitative research 13 preclude its being an overall solution to the problem of determining intervention effectiveness-quantitative methods are needed, too. ...
Article
Full-text available
The term “effective,” on its own, is honorific but vague. Interventions against serious mental illness may be “effective” at goals as diverse as reducing “apparent sadness” or providing housing. Underexamined use of “effective” and other success terms often obfuscates differences and incompatibilities in interventions, degrees of effectiveness, key omissions in effectiveness standards, and values involved in determining what counts as “effective.” Yet vague use of such success terms is common in the research, clinical, and policy realms, with consequences that negatively affect the care offered to individuals experiencing serious mental illness. A pragmatist-oriented solution to these problems suggests that when people use success terms, they need to explain and defend the goals and supporting values embedded in the terms, asking and answering the questions, “Effective at what? For whom? How effective? And why that goal?” Practical and epistemic standards for effectiveness will likely remain plural for good reasons, but each standard should be well explained and well justified.
... In accord with previous research, the current study reports that reasons for stopping medications include negative side effects (Larsen-Barr, 2016), few perceived benefits ( Roe et al., 2009), and a feeling that while symp- toms may be under control-the day-to-day existence often entails a sense of profound loss and emptiness, which medication causes and, thus, cannot address ( Davidson et al., 2010). Previous studies have also sug- gested that people often want to stop taking medication because it is a reminder of the illness and stigma associ- ated with it (Staiger, Waldmann, Krumm, & R?sch, 2016;Usher, 2001). ...
Article
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Refusal to take psychiatric medication as prescribed is often considered negative, harmful, and even reflective of a sign of one’s illness. However, recent research from diverse sources has challenged this axiom. The current study investigated the reasons, processes, experiences, and perceived impacts of medication discontinuation. The study was carried out using the narrative approach to life stories method. Participants were 12 women and 9 men who had discontinued their prescribed medication following psychiatric hospitalization. Four main themes were revealed in the data analysis: (a) the experience with medication, (b) the process of discontinuing medication, (c) elements that helped achieve successful medication discontinuation, and (d) the perceived impact of medication discontinuation. Our findings challenge the widespread notion that discontinuing psychiatric medication is necessarily negative and suggest that, for some, it is a legitimate and meaningful life choice.
Book
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https://www.routledge.com/Barriers-to-Recovery-from-Psychosis-A-Peer-Investigation-of-Psychiatric/Sharma/p/book/9781032158327. Preview available on the link above. Chapter abstracts available via the following link: https://www.taylorfrancis.com/books/mono/10.4324/9781003248804/barriers-recovery-psychosis-prateeksha-sharma
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In the past 15 years, researchers utilizing prescription databases to assess medication usage have concluded that antipsychotics reduce mortality in patients diagnosed with schizophrenia and other psychotic disorders. These findings stand in contrast to studies in non-psychiatric patients that have found that antipsychotics, because of their adverse effects on physical health, increase the risk of early death. A critical review of the evidence reveals that the worry remains. There is reason to conclude that antipsychotics contribute to the ‘mortality gap’ between the seriously mentally ill and the general population and that the database studies are plagued with methodological and reporting issues. Most importantly, the database studies tell of mortality rates within a drug-centered paradigm of care, which confounds any comparison of mortality risks when patients are on or off antipsychotics.
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Background: In a Hull and Holderness Community NHS Trust audit of prescribing in unipolar depression, 55 patients were identified as taking a redundant conventional antipsychotic with no apparent diagnostic indication. Concerns regarding these patients' polypharmacy, duration of treatment, and risk of long-term or undetected side effects led to their being contacted with a view to the discontinuation of conventional antipsychotic treatment. Method: All case notes were scrutinized to validate, as far as possible, the diagnosis of unipolar depression without psychotic features. Patients were invited for a review of their medication. Ratings of symptoms (Brief Psychiatric Rating Scale), depression (Hamilton Rating Scale for Depression), motor side effects (Abnormal Involuntary Movement Scale), and personal function (Independent Living Skills Survey) were made before and after conventional antipsychotic discontinuation. The study was conducted Autumn 1999-Spring 2000. Results: None of the 55 patients were deemed to present comorbid depression secondary to any other diagnosis. One patient could not be contacted; 14 patients, who tended to be older, refused the review. Of the remaining 40 who were seen, 25 had already discontinued antipsychotic treatment; their chronicity of illness was half that of the 15 patients continuing antipsychotic treatment. However, only 11 of these 25 patients had their medications discontinued under consultant psychiatrist supervision following the audit; 14 patients had stopped medication of their own volition, or for unclear reasons. Of the remaining 15 patients, 13 had their conventional antipsychotic discontinued by us. There were clinically and statistically significant improvements in symptoms and side effects after antipsychotic treatment was discontinued, and a statistically significant improvement in personal health care function. Conclusion: In this small sample, discontinuation of nonindicated conventional antipsychotic treatment was associated with clear benefits. Conventional antipsychotics should be used with caution in nonpsychotic depressed patients, particularly in the long term. Reluctance to discontinue medication in more chronic patients may be misplaced.