Clozapine : service users more positive than clinicians

The antipsychotic drug clozapine has been recognised to be particularly effective in the treatment of treatment-resistant schizophrenia and schizoaffective disorder. There are monitoring programmes and protocols to manage clozapine's potentially life-threatening side effects but the constant monitoring involved can be very intrusive. There are also other minor side-effects of the drug which can be unpleasant, inconvenient, and, at times, extremely embarassing. An Australian study of 27 people taking clozapine looked at their experience and perceptions of the drug and compared it to the perceptions of their treating clinicians. Consumers reported drooling mouth as the most prevalent and severe side effect whereas clinicians saw difficulty staying awake as the most prevalent side effect and sleeping too much as the most severe one. Most clinicians overestimated the prevalence and severity of clozapine side effects. Most clinicians and consumers agreed that clozapine lifted mood. Only 19% of consumers were unhappy about blood tests whereas 52% of clinicians estimated that consumers were unhappy about them. The 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 the clinicians believed they were.

Hodge, Kay and Jespersen, Sean - Side-effects and treatment with clozapine: a comparison between the views of consumers and their clinicians. International Journal of Mental Health Nursing January 2008, 17(1), 2-8