Service users’ and carers’ views on research towards stratified medicine in psychiatry: a qualitative study

BMC Research Notes

Jennifer Walke²  James MacCabe¹  Constantina Papoulias²  Diana Rose² 

[1] Department of Psychosis Studies, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK;Service User Research Enterprise, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK

关键词: Carers;    Focus groups;    Qualitative methods;    Schizophrenia;    Antipsychotics;    Biomarkers;    Barriers to participation;    Stratified medicine;    Service user research;   

Others  :  1229954
DOI  :  10.1186/s13104-015-1496-y

 received in 2014-06-17, accepted in 2015-09-21,  发布年份 2015

【 摘 要 】

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 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.

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 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.

【 授权许可】

   
2015 Rose et al.

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