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Service users' and carers' views on research towards stratified medicine in psychiatry: A qualitative study

Research output: Contribution to journalArticle

Original languageEnglish
Article number489
JournalBMC Research Notes
Volume8
Issue number1
DOIs
Accepted/In press21 Sep 2015
Published28 Sep 2015

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  • art_3A10.1186_2Fs13104_015_1496_y

    art_3A10.1186_2Fs13104_015_1496_y.pdf, 1.04 MB, application/pdf

    Uploaded date:19 Feb 2016

    Version:Final published version

    Licence:CC BY

King's Authors

Abstract

Background: Approximately 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 user's and carer's 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. Methods: Participatory 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. Results: The 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. Conclusions: People with experience of treatment resistant schizophrenia would welcome stratified medicine research; however researchers should take into account how such experience might inflect service user's 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.

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