First-hand experiences of taking antipsychotics: findings from a large online survey

First-hand experiences of taking antipsychotics: findings from a large online survey

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Antipsychotics (‘neuroleptics’) are primarily prescribed to people experiencing symptoms of psychosis, which broadly refers to a loss of contact with what most people consider as ‘reality’; symptoms can include hallucinations (e.g. hearing voices that others don’t hear) and delusions (fixed, false beliefs) (Arciniegas D., 2015).

The evidence for antipsychotics largely comes from randomised controlled trials (RCTs) that predominantly assess ‘symptom reduction’ (Leucht S. et al, 2017). However, such trials may miss a lot of other factors by not considering the wider impacts of these drugs on people’s lives.

Qualitative research that has explored people’s experiences with these medications has indicated a large number of physical side-effects, as well as difficulties with social and psychological functioning. However, this evidence is largely overlooked when evaluating the effectiveness of antipsychotics, and this may be partly due to the small number of participants.

To address this, John Read and colleagues (2020) gathered responses from people around the world about what their experience of taking these medications has been like.

Antipsychotic medications are the recommended course of treatment for psychosis and these guidelines are mainly based upon evidence from RCTs.

Antipsychotic medications are the recommended by NICE as frontline treatment for psychosis and these guidelines are mainly based on evidence from RCTs.

Methods

The survey was advertised online through social media and by an Australian research company. Over 2,000 people responded; after initial screening, 650 people were included in the study.

Most of the participants (71.6%) were women and aged from 18-76. People from 29 different countries participated but the vast majority (72.2%) were from the United States, Australia, or the United Kingdom. The most frequently reported ethnicities were “white/Caucasian” (49.1%), “Australian” (11.2%), and European (6%). Most of the sample (57.2%) had taken antipsychotics for more than 3 years. The most common primary diagnoses were schizophrenia and other psychoses (34.5%), bipolar (21.5%), and depressive disorders (21.1%). Other diagnoses included personality, trauma, anxiety, dissociative and neurodevelopmental disorders.

A lot of the survey data was reported in a different research paper (Read et al, 2019). In this paper, the researchers focused on these questions:

  1. “Overall in my life antipsychotic medications have been…”
  2. “Is there anything else you would like to say, or emphasise, about your experiences with antipsychotic drugs?”

These questions were deliberately open-ended so that people could write as much or as little as they liked and could use their own words to describe their experiences.

Responses from each participant were given an Overall Antipsychotic Rating (OAR) from 1-7 based on the level of positivity or negativity in their statements.

Thematic analysis was then used to draw out the main themes from people’s comments.

Two researchers worked on this separately and then checked their results; reliability was high between the researchers.

Results

66.9% of the participants were categorised as more negative than positive in their experiences of taking antipsychotics based on their average OAR score.

Three main themes and many subthemes emerged from participants’ answers.

1. Positive experiences

The positive comments about antipsychotics included symptom reduction, sleep improvement, and general comments on their usefulness:

They stopped the voices, they brought me back to reality – 39, F, Ireland

I don’t know how I would survive without them – 31, F, Unites States

2. Mixed experiences

Many people identified both pros and cons to taking antipsychotics; particularly that they helped in the short-term, but caused problems with long-term use.

Is a necessary evil – 31, M, United Kingdom

3. Negative experiences

This was the largest theme by far and was split into the subthemes of adverse effects, interactions with prescriber, withdrawal, ineffective and unspecified.

A lot of people talked about the difficult side effects and the negative impacts of the medication on their lives:

Physical; weight gain, sedation and movement problems

The inner restlessness was probably one of the worst side effects I have ever experienced. Developed muscle spasms, jerking limbs, twitching, inner agitation, restless legs, and could no longer function – 34, F, Australia

Psychological; emotional numbing, cognitive dysfunction and caused/exacerbated psychosis

I was frightened about my loss of mental acuity – 63, F, United States

Long-term outcomes

I believe my health has been permanently damaged and my life shortened by unnecessary psychiatric drugging – 54, F, Canada

Relationships

I lost 10 years of my life. I withdrew from my sons, my siblings, and my friends – 70, F, United States

Suicidality

The flattening of my emotional, sexual and social state was unbearable. This lack of pleasure in my life drove me to suicidal ideation – 55, F, United Kingdom

People shared feelings that they had lacked support from medical professionals, were not made fully aware of the risks of taking antipsychotics, offered alternative approaches, or given information about withdrawal effects.

Two-thirds of participants shared mostly negative experiences of taking antipsychotics. Taking these drugs impacted people physically, psychologically, and socially.

Two-thirds of participants shared mostly negative experiences of taking antipsychotics. Taking these drugs impacted people physically, psychologically, and socially.

Conclusions

The researchers concluded that negative experiences of taking antipsychotics far outweighed positive ones, while many participants shared mixed feelings. Furthermore, studies that are limited to outcomes in symptom reduction may miss “the broader impact of drugs on people’s lives”.

Studies that are limited to outcomes in symptom reduction may miss “the broader impact of drugs on people’s lives”.

Studies that are limited to outcomes in symptom reduction may miss “the broader impact of drugs on people’s lives”.

Strengths and limitations

This was the largest survey to date of people’s experiences with antipsychotics, with 650 people from almost 30 countries. This study is clearly a useful addition to the research field.

Choosing to use open-ended questions, rather than tick-boxes or closed questions designed by researchers, enabled respondents to answer in-depth, reporting on the issues that were most important to them, using their own chosen words. Different methods may have limited the responses, for example, people may not have shared their dissatisfaction with their psychiatric consultations, and this is a crucial element of the experience with antipsychotics.

No study is perfect, and there are some limitations with this one:

  • The sample was largely made up of white Caucasian, Australian or European people. People from black and minority ethnic groups are at greater risk of psychosis and of being prescribed older antipsychotics (so, may have a higher risk of side effects), therefore the absence of their contributions in this study is a significant limitation.
  • Participants were not randomly selected, so it is possible that the sample was biased. People who had stronger opinions about antipsychotics may have been more likely to participate. However, the study certainly still provides valuable insights about antipsychotics.
  • It is difficult to know if the self-reported side effects were definitely related to antipsychotics and not something else, or that positive experiences were not also linked to life changes, as well as the medications.
  • As the survey was online it may have excluded people with no internet access or social media accounts. Nevertheless, using the online platform enabled the survey to reach far and wide and recruit a much larger number of participants.
  • We don’t know anything about those who chose not to take part or why (the non-participation rate).
  • Qualitative research should include critical thought of the researchers’ roles and potential biases when collecting or analysing the data. If this was considered here, it was not made clear in the paper.
By using open-ended questions, the survey gathered a wide range of information about the positive and negative experiences of taking antipsychotics as well as experiences with their prescriber.

By using open-ended questions, the survey gathered a wide range of information about the positive and negative experiences of taking antipsychotics as well as experiences with their prescriber.

Implications

Future research could aim to look at the populations underrepresented here, such as ethnic minorities, people from lower-income countries, or people who do not use the internet. Further exploration of why older people have more negative experiences, unrelated to how long they have taken antipsychotics, would be also helpful. Last but not least, it would be interesting to investigate prescribers’ knowledge and views on alternative treatment pathways.

By working on a psychiatric ward, I realise that many people with acute psychosis are treated with antipsychotics and that, often, it seems to work. In the short-term, antipsychotics appear to help people to get through the crisis point, calm, and return to a sense of safety. They can also enable people to engage in approaches, such as psychological or occupational therapy. All of this can facilitate a quicker discharge from the hospital and return home.

But what happens next? Once they’re out of the crisis point, do they have the opportunity to make informed decisions about their medications? Some people might not have been made fully aware of the risks when first prescribed (especially if they lacked the capacity to decide and were treated under the Mental Health Act); do they later have this opportunity? I quote a particularly important statement from the paper: “failure to fully inform people of adverse effects breaches the fundamental ethical principles of informed consent”.

I have spoken with many people who have been generally “well” (in terms of psychosis symptoms) for a long time but are told to continue taking their antipsychotics, despite suffering from numerous concerning side-effects and asking repeatedly to stop or reduce their medication. Sometimes this can lead to people choosing to stop their medication suddenly and without guidance, which can bring on difficult withdrawal effects, followed by a return to antipsychotics on perhaps an even higher dose, or admission to hospital. Refusal to take medication is often perceived as ‘non-compliance’. Management of side effects can often be through adding even more medications to the prescription.

As well as being an enjoyable read, this paper has highlighted what a lot of people who have used antipsychotics probably already know, but which might not have previously been fully appreciated or heard. The potentially helpful aspects of antipsychotics should not be disregarded, but the possible unhelpful and even harmful effects need to be widely recognised. First-hand accounts should be included within the evidence base for antipsychotics. We need further development of alternative approaches (see Cooper R. et al, 2019, for examples). Finally, and crucially, we need people to feel empowered to make informed choices about their treatment.

Clinicians should aim to work collaboratively with patients, providing them with the full facts and giving them an opportunity to make an informed choice and share concerns.

Clinicians should aim to work collaboratively with patients, providing them with the full facts and giving them an opportunity to make an informed choice and share concerns.

Statement of interests

I am currently working on the RADAR trial, which seeks to investigate the effects of a gradual, supported reduction (and possibly, stopping) of antipsychotics compared to continuing on the same dose. The basis of the trial is not ‘anti-medication’, but rather a critical lens of current prescribing practices; that whilst antipsychotics might be helpful in the short-term there is less evidence or guidance for the long-term.

Links

Primary paper

Read J, Sacia A. Using open questions to understand 650 people’s experiences with antipsychotic drugs. Schizophrenia Bulletin. 2020 Feb 12.

Other references

Arciniegas DB. Psychosis. Continuum: Lifelong Learning in Neurology. 2015 Jun;21(3 Behavioral Neurology and Neuropsychiatry):715.

Leucht S, Leucht C, Huhn M, Chaimani A, Mavridis D, Helfer B, Samara M, Rabaioli M, Bächer S, Cipriani A, Geddes JR. Sixty years of placebo-controlled antipsychotic drug trials in acute schizophrenia: systematic review, Bayesian meta-analysis, and meta-regression of efficacy predictors. American Journal of Psychiatry. 2017 Oct 1;174(10):927-42.

Cooper RE, Laxhman N, Crellin N, Moncrieff J, Priebe S. Psychosocial interventions for people with schizophrenia or psychosis on minimal or no antipsychotic medication: a systematic review. Schizophrenia research. 2020 Nov 1;225:15-30.

Related paper based on the same survey

Read J, Williams J. Positive and negative effects of antipsychotic medication: an international online survey of 832 recipients. Current drug safety. 2019 Nov 1;14(3):173-81.

Photo credits

Georgie is a psychology graduate with an MSc in Clinical Mental Health Sciences from UCL. She currently works jointly as an Assistant Psychologist on a psychiatric inpatient ward and as a Research Assistant on the RADAR research trial, which is investigating the effects of gradual reduction and discontinuation of antipsychotic medications. Georgie has worked with young people and adults with mental health difficulties in community and inpatient settings. Her research interests include post-traumatic mental health and trauma-informed care and she has recently published research on psychosis-related PTSD (https://rdcu.be/cdAnO).

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