As published in the March 1st 2019 edition of Drug Safety, this survey was conducted by John Read and James Williams. The abstract says:
“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 …”
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