Using Open Questions to Understand 650 People’s Experiences with Antipsychotic Drugs

Studies of antipsychotic medication, which are increasingly prescribed for a broad range of problems and circumstances, rarely ask the people who take them to describe their experiences with the drugs. In this study 650 people, from 29 countries, responded, in an online survey, to ‘Overall in my life antipsychotic medications have been ……….?’ and ‘Is there anything else you would like to say, or emphasise, about your experiences with anti-psychotic drugs?’ 14.3% of participants were categorised as reporting purely positive experiences, 27.9% had mixed experiences, and 57.7% reported only negative ones. Negative experiences were positively correlated with age. Thematic analysis identified 749 negative, 180 positive, and 53 mixed statements. The two positive themes were ‘symptom reduction’ (14) and ‘sleep’ (14), with the majority (153) unspecified. The four negative themes (besides ‘unspecified’ - 191) were: ‘adverse effects’ (316), ‘interactions with prescriber’ (169), ‘withdrawal/difficult to get off them’ (62) and ‘ineffective’ (11). The adverse effects included: weight gain, emotional numbing, cognitive dysfunction, sedation, akathisia, withdrawal effects, effects on relationships, and suicidality. ‘Interactions with prescribers’ included lack of information, support, or discussion of alternatives. The only mixed theme was ‘short-term good, long-term bad’ (28). Open questions can add to findings from methodologies focussed on symptom reduction. Clinicians should pay more attention to the need for respectful and collaborative patient-prescriber relationships. At the point of prescription this must include providing the full range of information about antipsychotics, including potential benefits and harms, the difficulty in withdrawing, and information on alternatives treatments such as psychological therapies.