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Curr Drug Saf. 2019 Mar 1. doi: 10.2174/1574886314666190301152734. [Epub ahead of print]

Positive and negative effects of antipsychotic medication: an international online survey of 832 recipients.

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1
School of Psychology, University of East London, London. United Kingdom.
2
Department of Psychological Sciences, Swinburne University of Technology, Melbourne. Australia.

Abstract

BACKGROUND:

Antipsychotic medication is currently the treatment of choice for psychosis, but few studies directly survey the first hand experience of recipients.

OBJECTIVES:

To ascertain the experiences and opinions of users of an international sample of antipsychotic drugs regarding positive and negative effects.

METHOD:

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. Conclusions Clinical implications are discussed, with a particular focus on the principles of informed consent, and involving patients in decision making about their own lives.

KEYWORDS:

Antipsychotic drugs; informed consent; psychosis; quality of life; sedation; side effects; suicidality

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