Mental Health Diagnosis Patient Reported Experience Measure v1.0

  • Research type

    Research Study

  • Full title

    Development and validation of a Mental Health Diagnosis Patient Reported Experience Measure v1.0

  • IRAS ID

    328583

  • Contact name

    Kathryn Janes

  • Contact email

    kathryn.janes@nsft.nhs.uk

  • Sponsor organisation

    Norfolk & Suffolk NHS Foundation Trust

  • Duration of Study in the UK

    1 years, 6 months, 0 days

  • Research summary

    Being diagnosed with a mental health disorder significantly impacts individuals. It can help them understand their symptoms, feel hopeful about treatment, and provide a shared language for their difficulties. However, it can also lead to feelings of stigma and hopelessness, which are crucial in the recovery process. How a diagnosis is delivered—whether patients feel heard, involved, and well-informed—can greatly affect whether it is seen as helpful or harmful.

    Currently, there is no standardised way to measure people's experience of receiving a mental health diagnosis. This research project aims to develop and validate a Patient Reported Experience Measure (PREM) for adults receiving a mental health diagnosis.

    Funded by the Canadian Institutes of Health Research (CIHR), the project involves collaboration between Norfolk and Suffolk NHS Foundation Trust (UK) and a research team at the University of Ottawa, led by Professor Cary Kogan. It includes two components that will generate data in both the UK and Canada. Ethical approval is being sought from the University of Ottawa for the Canadian research activity, while HRA approval is requested for UK-based research activity including recruitment, data collection, data storage and analysis of the UK data.

    Participants, all adults who have received a mental health diagnosis, will engage electronically. A pilot study (n=30) will assess the accessibility and acceptability of the measure. Participants will provide feedback in Cognitive Processing Feedback Interviews conducted via video conferencing, offering insights on content and clarity.

    The measure will then undergo psychometric testing with a larger sample (n=350) to assess its reliability, factor structure, and validity, ultimately refining and finalising the PREM items.

  • REC name

    South Central - Oxford C Research Ethics Committee

  • REC reference

    24/SC/0349

  • Date of REC Opinion

    24 Oct 2024

  • REC opinion

    Favourable Opinion