Investigating outcome in children with CFS/ME

  • Research type

    Research Study

  • Full title

    Investigating Outcome in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

  • IRAS ID

    146840

  • Contact name

    Esther Crawley

  • Contact email

    esther.crawley@bristol.ac.uk

  • Sponsor organisation

    Royal National Hospital for Rheumatic Diseases

  • Research summary

    This study will: define recovery in paediatric CFS/ME; investigate how many children recover after accessing a specialist service; when they recover and what factors predict recovery.
    Design: Longitudinal cohort and focus groups.
    LONGITUDINAL COHORT: 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. Participants will be asked to complete follow up questionnaires at 6, 12 and 24 months either using paper questionnaires (currently used clinically) or completing questionnaires on-line.
    FOCUS GROUPS: We will run focus groups (3 for children, 3 for their parents and 1 for clinicians) to define recovery and outcome. The focus groups will explore how recovery should be defined and what the smallest difference in fatigue and disability is beneficial. This will allow us to define the Minimum Clinically Important Difference (MCID) used to calculate how many are participants are need in trials. For the focus groups, we want children who have and have not recovered. We will therefore recruit children (and their parents) at assessment and we will therefore also contact children who have been discharged from the Bath/Bristol service and invite them to take part in the focus groups. Children will be eligible for the focus groups if they are have a diagnoses of CFS/ME and are age 12 to 18. We will recruit clinicians from the British Association for CFS/ME. Focus groups will be run in either Bath or Bristol, will last between one and two hours with a break in the middle.
    Analysis: Focus groups will aim to reach consensus. The definition of recovery will be used to define recovery in the longitudinal cohort.

  • REC name

    North West - Preston Research Ethics Committee

  • REC reference

    14/NW/0170

  • Date of REC Opinion

    17 Mar 2014

  • REC opinion

    Favourable Opinion