Abstract
BackgroundApproximately 30 % of people with a diagnosis of schizophrenia receive little to no benefit from current medications. There is therefore an urgent need to develop more precisely targeted and effective treatments. Identifying biomarkers to predict response to treatment and stratify patients into groups may be a way forward. However, we know little about service users’ and carers’ attitudes regarding such a ‘stratified medicine’ approach for psychiatry—nor how this might impact on their willingness to participate in stratified medicine research. This paper presents psychiatric service user and carer views on research to develop stratified medicine for treatment resistant schizophrenia, and explores the conditions under which people would be prepared to participate in a trial and their willingness to undergo various research procedures.MethodsParticipatory methods were used throughout. A consultation was undertaken with an existing Service User Advisory Group (SUAG) in order to establish a topic guide. Service user focus groups were then conducted by service user researchers in Manchester, London and Edinburgh (totalling 18 people) and one carer focus group in London, attended by eight participants. Focus groups were digitally recorded, the transcripts analysed in NVivo 10 using a simple thematic analysis, and quotations de-identified to protect participants.ResultsThe data reflected enthusiasm for the potential of stratified medicine and both service users and carers demonstrated a strong desire to help others. However, some service users and carers feared poor performance on neuropsychological assessments, and reported that certain medication side effects might discourage them from undergoing procedures demanding immobility and concentration. Concerns were voiced that stratified medicine could encourage an overemphasis on biological symptoms, at the expense of psychosocial factors and subjective experience.ConclusionsPeople with experience of treatment resistant schizophrenia would welcome stratified medicine research; however researchers should take into account how such experience might inflect service users’ willingness to undergo various procedures in the context of this research. These results reinforce the value of service user perspectives in the development and evaluation of novel treatment approaches.
Highlights
30 % of people with a diagnosis of schizophrenia receive little to no benefit from current medications
Diagnostic precision is pressing in the case of psychosis spectrum disorders: approximately 20–30 % of people with a diagnosis of schizophrenia do not respond to initial medication treatment, while in a significant proportion of cases treatment resistance persists for a number of years [5]
This paper reports on a service user led qualitative study, which elicited psychiatric service users’ and carers’ perspectives on the value of stratified medicine for treatment resistant schizophrenia
Summary
30 % of people with a diagnosis of schizophrenia receive little to no benefit from current medications. Current advances in imaging technologies and in data aggregation are making it possible to pursue the stratification of prognosis and treatment in a number of other fields, such as neurology, where the evidence base for particular treatments has been poor [3] In this context there is growing research interest in the development of stratified medicine for psychiatry, a field where the biological underpinnings of illness are not currently well understood. Recent studies suggest that for a significant number of service users, reduction or discontinuation of medication after first episode psychosis does not lead to increase in relapse rates and may facilitate recovery [6], while a number of service users may achieve recovery through psychosocial interventions alone [7] These findings testify to a pressing need for a stronger evidence base for treatment in this area, as the currently used symptom-based nosological categories may be bringing together heterogeneous types under a single diagnostic heading [7]. The reference to biomarkers may not be entirely accurate here, as cognitive tests—i.e. psychological markers—may prove more effective in stratifying populations in the context of psychiatric nosologies [8]
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