Notes from a survey on patient perceptions of clozapine

In an effort to find research on patient's experiences of clozapine I came across this survey which is one of the few 'qualitative' research I could find (and the word "qualitative" is used in its broadest scope to describe this survey).

Taylor, D. 2000, "Clozapine - a survey of patient perceptions", The Psychiatrist (2000) 24: 450-452. doi: 10.1192/pb.24.12.450
http://pb.rcpsych.org/cgi/content/full/24/12/450

This is the only study done. 3 of the researchers work for a pharmaceutical company.

The conclusions state
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The large number of respondents in this survey makes more likely the probability that our results are broadly representative of clozapine patients in general. However, our response rate (44.4%) obviously represents a minority of patients surveyed, and our respondents formed something of a select group. All, by definition, were good attenders at clozapine clinics and all felt capable of or motivated to completing the questionnaire. Most were men and Caucasian and by far the majority had been on clozapine for longer than a year. It might be assumed, therefore, that our respondents are representative only of a sub-group of patients who have done well on clozapine and who undergo blood tests only monthly. (Although, an analysis of 77 patients on clozapine for less than 6 months revealed broadly similar attitudes to treatment.) It should also be noted that our questionnaire is not yet validated as a precise tool for evaluating patient perceptions.
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44% is a pretty appauling response rate in academic circles. There seems like no attempt has been made to contact the non-respondents and those may have more negative experiences than those who responded.

From the results the patient experience of clozapine is positive however the authors have included very little information about the results. For example was the onus on quality of life or reduction in psychiatric symptoms
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 An open question on the perceived benefits of clozapine treatment revealed that efficacy benefits were most apparent: 35.4% (202 of 570 respondents) cited ‘feeling better’ as something they liked about clozapine.
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Patient characteristics also show a few flaws in the study.
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Respondents were predominately men (63.3%) and Caucasian (89.5%), but African-Caribbeans (4.9%) and Asians (2.8%) were also represented.
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Given the already well established overdiagnosis of black men with schizophrenia I would guess (though I could be wrong) that there should be a higher percentage of black people in the study if it were representative.

As always the study ends with more research need.
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Future research should address perceptions of patients less well established on clozapine undergoing more frequent blood testing.
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But really it should say, "Future research should be a decent, high quality, unbiased study because this one isn't worth the 0 and 1's its written with" (I accessed it online).