2014 Conference

Abstract:

Key issue: Anti-psychotic medications are associated with negative side effects that can impact on quality of life and are associated with poor adherence and relapse (Haddad et al., 2011). Therefore, there is a need for regular side effects monitoring. Service users may have additional and different concerns to clinicians. It would be of value to increase the level of information used to evaluate the side effects of antipsychotics from the point of view of the service user.

Aim: To develop a patient-reported outcome measure of anti-psychotic medication side effects using an innovative participatory methodology to maximise the opportunity for service user involvement (Rose et al., 2011).

Method: An initial bank of items was drawn from three existing side effects measures. A group of psychiatrists and pharmacists determined the importance of specific side effects for use in the new measure. Service user focus groups identified their most important side effects. From these data, service user researchers constructed the measure. Service users who take anti-psychotic medication or antidepressant medication completed the measure twice to investigate the properties and feasibility of the measure.

Results: The measure is easy to understand and complete by service users. The measure showed strong stability over time and was able to discriminate different patterns between people experiencing depression and those with a diagnosis of schizophrenia although there was a lot of overlap. Participants with high levels of psychosis symptoms did not endorse more side effects.

Conclusions: A participatory methodology was used to generate a self-report questionnaire measuring service users’ experience of anti-psychotic medication side effects. This research is a demonstration of how service users can be involved throughout the research process.

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