Attempting to stop antipsychotic medication: success, supports, and efforts to cope

Larsen-Barr, Miriam; Seymour, Fred; Read, John; Gibson, Kerry

doi:10.1007/s00127-018-1518-x

Cited by 22 publications

(14 citation statements)

References 32 publications

(50 reference statements)

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“…The withdrawal effects experienced when stopping or reducing of antipsychotics has not received the attention it warrants. The finding that 65% of the current sample reported ‘withdrawal effects’ (self-defined) is similar to a recent finding that 65 of 105 (62%) people trying to come off antipsychotics experienced withdrawal effects [20]. Withdrawal effects can, and should, be distinguished from a relapse of the pre-existing psychosis symptoms [42] so that people can receive the acknowledgement and support they need to gradually come off if they wish to do so [20-22, 42].…”

Section: Discussionsupporting

confidence: 88%

“…Questions relating to psychosis and antipsychotics were added, based largely on the research summarized above. The section regarding withdrawal was based on a survey developed by Larsen-Barr and colleagues, also in New Zealand [20]. The current online questionnaire used Qualtrics survey software, and generated quantitative (yes/no and multiple-choice questions) and qualitative data (open-ended questions) about: the prescribing experience, the positive and negative effects of medications, causal beliefs about psychosis/depression, alternative treatments, experiences of withdrawing from the medications, and demographics.…”

Section: Methodsmentioning

confidence: 99%

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Positive and Negative Effects of Antipsychotic Medication: An International Online Survey of 832 Recipients

Read

Williams

2019

CDS

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Background: Antipsychotic medication is currently the treatment of choice for psychosis, but few studies directly survey the first-hand experience of recipients. Objective: To ascertain the experiences and opinions of an international sample of users of antipsychotic drugs, regarding positive and negative effects. Methods: An online direct-to-consumer questionnaire was completed by 832 users of antipsychotics, from 30 countries – predominantly USA, UK and Australia. This is the largest such sample to date. Results: Over half (56%) thought, the drugs reduced the problems they were prescribed for, but 27% thought they made them worse. Slightly less people found the drugs generally ‘helpful’ (41%) than found them ‘unhelpful’ (43%). While 35% reported that their ‘quality of life’ was ‘improved’, 54% reported that it was made ‘worse’. The average number of adverse effects reported was 11, with an average of five at the ‘severe’ level. Fourteen effects were reported by 57% or more participants, most commonly: ‘Drowsiness, feeling tired, sedation’ (92%), ‘Loss of motivation’ (86%), ‘Slowed thoughts’ (86%), and ‘Emotional numbing’ (85%). Suicidality was reported to be a side effect by 58%. Older people reported particularly poor outcomes and high levels of adverse effects. Duration of treatment was unrelated to positive outcomes but significantly related to negative outcomes. Most respondents (70%) had tried to stop taking the drugs. The most common reasons people wanted to stop were the side effects (64%) and worries about long-term physical health (52%). Most (70%) did not recall being told anything at all about side effects. Conclusion: Clinical implications are discussed, with a particular focus on the principles of informed consent, and involving patients in decision making about their own lives.

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Section: Discussionsupporting

confidence: 88%

Section: Methodsmentioning

confidence: 99%

Positive and Negative Effects of Antipsychotic Medication: An International Online Survey of 832 Recipients

Read

Williams

2019

CDS

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“…The present investigation reveals wide variation in the practical implementation of self-reported gradual withdrawal and highlights that some people may believe they are following a gradual withdrawal method that is in reality a swift taper which is unlikely to provide them the opportunity to stabilise before the next reduction or adjust their plans as recommended. A range of psycho-social variables may also exert an influence in this process, which we explore further in another article (Larsen-Barr et al, 2018).…”

Section: Withdrawal Methodsmentioning

confidence: 99%

Attempting to discontinue antipsychotic medication: Withdrawal methods, relapse and success

Larsen-Barr

Seymour

Read

et al. 2018

Psychiatry Research

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Highlights Among 105 people who attempted to stop taking antipsychotic medication, less than half consulted a doctor in preparation and approximately a third used a gradual withdrawal method. Just over half described successfully stopping and half reported no current use.  Unwanted withdrawal effects were reported by 61.9% of the group and spanned emotional, cognitive, physical, and functional domains. Withdrawing gradually across more than one month showed significant, positive associations with self-described success and no current use. AbstractFew studies explore subjective experiences of attempting to discontinue antipsychotic medication, the withdrawal methods people use, or how their efforts affect their outcomes. People who take antipsychotics for off-label purposes are poorly represented in the literature. This study investigates experiences of attempting to discontinue antipsychotics in a cross-sectional sample and explores potential associations between withdrawal methods, relapse, and success. An anonymous online survey was completed by 105 adults who had taken antipsychotics for any reason and had attempted discontinuation at least once. A mixed methods approach was used to interpret the responses. Just over half (55.2%) described successfully stopping for varying lengths of time. Half (50.5%) reported no current use. People across diagnostic groups reported unwanted withdrawal effects, but these were not universal. Withdrawing gradually across more than one month was positively associated, and relapse was negatively associated with both self-defined successful discontinuation and no current use. Gradual withdrawal was negatively associated with relapse during withdrawal. We conclude it is possible to successfully discontinue antipsychotic medication, relapse during withdrawal presents a major obstacle to successfully stopping AMs, and people who withdraw gradually across more than one month may be more likely to stop and to avoid relapse during withdrawal.

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“…Support from friends, family and professionals is also helpful for people trying to come off any drug that affects emotions and behaviour, and this is especially important with neuroleptic withdrawal given the risk of relapse. 69 Although general attitudes towards medical treatment have changed significantly, and patients are no longer the passive recipients of medical beneficence nor doctors the final arbiters of what must be done, many psychiatrists remain nervous about helping patients to stop neuroleptics, fearing they will be blamed if something goes wrong. Yet others do support patients to reduce or stop neuroleptic treatment when they request it, and even encourage patients to consider this option who have not previously done so.…”

Section: Enhancement Of Personal Resources For Copingmentioning

confidence: 99%

Barriers to stopping neuroleptic (antipsychotic) treatment in people with schizophrenia, psychosis or bipolar disorder

Gupta

Horowitz

2020

Therapeutic Advances in Psychopharmacology

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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.

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Attempting to stop antipsychotic medication: success, supports, and efforts to cope

Cited by 22 publications

References 32 publications

Positive and Negative Effects of Antipsychotic Medication: An International Online Survey of 832 Recipients

Positive and Negative Effects of Antipsychotic Medication: An International Online Survey of 832 Recipients

Attempting to discontinue antipsychotic medication: Withdrawal methods, relapse and success

Barriers to stopping neuroleptic (antipsychotic) treatment in people with schizophrenia, psychosis or bipolar disorder

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