Side-effects and treatment with clozapine: a comparison between the views of consumers and their clinicians.

This study sought to clarify the prevalence of various side-effects experienced by consumers taking clozapine (n = 27) and to elucidate the impact of clozapine on their quality of life. Responses of consumers were contrasted with those of clinicians to highlight any discrepancies between the two groups, thus providing a focus for the improvement of clinical practice. Consumers completed a demographic questionnaire, the Liverpool University Neuroleptic Side-Effect Rating Scale. They next took part in a semistructured interview, which explored their attitudes to clozapine treatment. File searches provided historical data for antipsychotic use before the prescription of clozapine. Clinicians completed the same instruments and submitted them by mail. Most clinicians overestimated the prevalence and severity of clozapine side-effects. Consumers reported drooling mouth as the most prevalent and severe side-effect, whereas clinicians estimated that difficulty staying awake was the most prevalent side-effect, and the most severe side-effect was sleeping too much. Clinicians and consumers agreed that clozapine lifts mood. Only 19% of consumers were unhappy about blood tests, whereas 52% of clinicians estimated that consumers were unhappy about blood tests. This study suggests that despite significant side-effects and regular blood tests, most stable consumers taking clozapine were happier and more satisfied with their treatment than many of their clinicians believed they were. The study also highlights the need for clinicians to ask consumers about the different side-effects they may be experiencing, so they can provide clinical support to improve their quality of life.