Developing a PROM for Children with CFS/ME: Cognitive Interviews

  • Research type

    Research Study

  • Full title

    Developing a Patient Reported Outcome Measure (PROM) for Children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Cognitive Interviews with Children.

  • IRAS ID

    194846

  • Contact name

    Roxanne Parslow

  • Contact email

    roxanne.potgieter@bristol.ac.uk

  • Sponsor organisation

    Royal United Hospitals Bath NHS Foundation Trust

  • Duration of Study in the UK

    0 years, 5 months, 29 days

  • Research summary

    This study will: Evaluate whether children understand and interpret questions in a new paediatric CFS/ME Patient Reported Outcome Measure (PROM)/ questionnaire the way that was intended.
    Design: Cognitive interviews
    Recruitment: We will recruit children attending a specialist CFS/ME service in the Bath/Bristol area.
    Children will be eligible if they have a diagnosis of CFS/ME and are between 8 and 18 years old and are mild to moderately affected (not housebound).
    We will recruit children at assessment and follow up.
    Cognitive Interviews: In the cognitive interview process, patients are asked to say what they are thinking as they work through the questionnaire—to think aloud and then they will be asked open ended semi structured interview questions about how they make sense of questionnaire items. Cognitive interviews will take up to 30 minutes.
    Analysis: Interviews will be audio-recorded and transcribed. We will use thematic analyses in an iterative process. The results will inform the development of the PROM.

  • REC name

    West of Scotland REC 3

  • REC reference

    16/WS/0011

  • Date of REC Opinion

    25 Jan 2016

  • REC opinion

    Further Information Favourable Opinion