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Mental health
Research
What proportion of patients with psychosis is willing to take part in research? A mental health electronic case register analysis
  1. Rashmi Patel1,5,
  2. Sherifat Oduola2,5,
  3. Felicity Callard3,
  4. Til Wykes4,5,
  5. Matthew Broadbent5,
  6. Robert Stewart5,6,
  7. Thomas K J Craig2,5,
  8. Philip McGuire1,5
  1. 1Department of Psychosis Studies, King's College London, Institute of Psychiatry, Psychology & Neuroscience, London, UK
  2. 2King's College London, Health Service and Population Research, Institute of Psychiatry, Psychology & Neuroscience, London, UK
  3. 3Department of Geography and Centre for Medical Humanities, Durham University, Durham, UK
  4. 4Department of Psychology, King's College London, Institute of Psychiatry, Psychology & Neuroscience, London, UK
  5. 5South London and Maudsley NHS Foundation Trust, Biomedical Research Centre Nucleus, Mapother House, London, UK
  6. 6Department of Psychological Medicine, King's College London, Institute of Psychiatry, Psychology & Neuroscience, London, UK
  1. Correspondence to Dr Rashmi Patel; bmj{at}rpatel.co.uk

Abstract

Objective The proportion of people with mental health disorders who participate in clinical research studies is much smaller than for those with physical health disorders. It is sometimes assumed that this reflects an unwillingness to volunteer for mental health research studies. We examined this issue in a large sample of patients with psychosis.

Design Cross-sectional study.

Setting Anonymised electronic mental health record data from the South London and Maudsley NHS Foundation Trust (SLaM).

Participants 5787 adults diagnosed with a psychotic disorder.

Exposure Whether approached prior to 1 September 2014 for consent to be approached about research participation.

Main outcome measures Number of days spent in a psychiatric hospital, whether admitted to hospital compulsorily, and total score on the Health of the Nation Outcome Scale (HoNOS) between 1 September 2014 and 28 February 2015 with patient factors (age, gender, ethnicity, marital status and diagnosis) and treating clinical service as covariates.

Results 1187 patients (20.5% of the total sample) had been approached about research participation. Of those who were approached, 773 (65.1%) agreed to be contacted in future by researchers. Patients who had been approached had 2.3 fewer inpatient days (95% CI −4.4 to −0.3, p=0.03), were less likely to have had a compulsory admission (OR 0.65, 95% CI 0.50 to 0.84, p=0.001) and had a better HoNOS score (β coefficient −0.9, 95% CI −1.5 to −0.4, p=0.001) than those who had not. Among patients who were approached, there was no significant difference in clinical outcomes between those agreed to research contact and those who did not.

Conclusions About two-thirds of patients with psychotic disorders were willing to be contacted about participation in research. The patients who were approached had better clinical outcomes than those who were not, suggesting that clinicians were more likely to approach patients who were less unwell.

  • CRIS
  • C4C
  • consent
  • bipolar disorder
  • clinical research

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

https://doi.org/10.1136/bmjopen-2016-013113

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    Footnotes

    • RP, SO, TKJC and PM contributed equally.

    • Contributors The study was conceived by RP, SO, TKJC and PM. The data extraction and statistical analysis was performed by RP. Reporting of findings was carried out by RP and SO, supervised by TKJC and PM. All authors contributed to manuscript preparation and approved the final version.

    • Funding MB, TW, PM, TKJC, SO and RS receive support from the National Institute for Health Research (NIHR) Biomedical Research Centre and Dementia Biomedical Research Unit at South London and Maudsley NHS Foundation Trust and King’s College London, which also supports the development and maintenance of the BRC Case Register. RP is supported by a UK Medical Research Council (MRC) Clinical Research Training Fellowship (MR/K002813/1). FC is supported by the Wellcome Trust (103817/Z/14/Z). TW is supported by a NIHR Senior Investigator Award.

    • Competing interests All authors have completed the ICMJE uniform disclosure form at http://www.icmje.org/coi_disclosure.pdf and declare: the CRIS team MB and RS have received research funding from Roche, Pfizer, Johnson & Johnson and Lundbeck. PM has received research funding from Janssen, Sunovion, GW and Roche.

    • Ethics approval The CRIS data resource received ethical approval as an anonymised data set for secondary analyses from Oxfordshire REC C (Ref: 08/H0606/71+5). The SLaM C4C model was reviewed and approved by the National Information Governance Board for Health and Social Care (NIGB) Ethics and Confidentiality committee (reference ECC 2-08/2010).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement The data accessed by CRIS remain within an NHS firewall and governance is provided by a patient-led oversight committee. Subject to these conditions, data access is encouraged and those interested should contact RS (robert.stewart@kcl.ac.uk), CRIS academic lead.