John Read* and James Williams Pages 173 - 181 ( 9 )
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.
Antipsychotic drugs, psychosis, suicidality, sedation, TAE, second generation, maudsley side effects.
School of Psychology, University of East London, London, Department of Psychological Sciences, Swinburne University of Technology, Melbourne