EXPLORER: EXPLORing CFS/ME in youngER children (ages 5-7)

  • Research type

    Research Study

  • Full title

    Exploring chronic fatigue syndrome/myalgic encphalomyelitis in children aged 5-7 years.

  • IRAS ID

    210532

  • Contact name

    Amberly Brigden

  • Contact email

    amberly.brigden@bristol.ac.uk

  • Duration of Study in the UK

    3 years, 0 months, 1 days

  • Research summary

    Research Summary:
    Aims and objectives
    The overall aim is to develop an understanding of CFS/ME in children age 5-7 years. This will be done by exploring the epidemiology (demographic and clinical characteristics) and capturing the views and experiences of parents/carers and children. To carry out this work effectively it will be important to explore measures and data collection methods appropriate for this age group.

    Specific objectives are:
    • To carry out a prospective cohort study of children with CFS/ME aged 5-7 capturing baseline, 6 and 12 month follow-up data.
    • To carry out integrated qualitative methods to explore the child and parents/ carers experience of the illness as well as explore feasible and acceptable outcome measures and methods of data collection.

    Design
    Cohort study with integrated qualitative methods.
    Part 1: Cohort Study
    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 5- 7 years old. We will collect baseline data and 6 month and 12 month follow up data from patients, parents/ carers, schools and clinicians. Follow-up questionnaires will be completed on-line.

    Part 2: Integrated qualitative methods
    For the qualitative interviews we will exclude children who are severely affected. Interviews will take place in clinic, the patient's home or via Skype depending on patient preference. We will invite parents to participate in two interviews and children to participate in one. We anticipate each parental interview to take no longer than one hour and child interviews to take no longer than 30 minutes. We will offer families the opportunity to do a number of shorter interviews if this is preferred.

    Summary of Results:
    : Longitudinal cohort study:
    I analysed longitudinal data to describe the characteristics of younger children with CFS/ME, identify the proportion of children reaching the minimal clinically important difference (MCID) on the SF36-PFS at six months, and explore risk factors to poorer outcomes.
    I analysed data from 101 participants. Children presented with significant physical disability, fatigue and pain. The most common symptoms were sleep disturbance, cognitive dysfunction and a proportion experienced co-morbid anxiety.

    Qualitative study:
    I conducted qualitative interviews with younger children with CFS/ME, parents/carers, clinicians and teachers, to explore their views on how treatments could be adapted for this younger population. I analysed data thematically.

    I interviewed 42 participants. Child‐centred care was seen as essential, whilst acknowledging the child’s limited capacity for self-management (theme one). Interventions may be enhanced by integrating care across home, school and clinical settings (themes two and three).

  • REC name

    South West - Cornwall & Plymouth Research Ethics Committee

  • REC reference

    16/SW/0335

  • Date of REC Opinion

    9 Dec 2016

  • REC opinion

    Favourable Opinion