Prognostication of Long-term outcomes in Paediatric Low-Grade Glioma

  • Research type

    Research Study

  • Full title

    Development Of A Multi-Factorial Prognostic Model To Optimise Treatment Decision Making And Outcomes in Paediatric Low-Grade Glioma: A Mixed Methods Study.

  • IRAS ID

    292434

  • Contact name

    Darren Hargrave

  • Contact email

    darren.hargrave@ucl.ac.uk

  • Sponsor organisation

    Great Ormond Street Hospital

  • Duration of Study in the UK

    1 years, 5 months, 29 days

  • Research summary

    Paediatric Low-Grade Gliomas (PLGGs) are the commonest childhood brain tumour; representing 30-40% of all childhood brain tumours. PLGGs are non-malignant, slow-growing tumours; with 92% patients alive 20 years from diagnosis.
    Whilst previous research has investigated PLGG prognostic variables associated with overall survival (whether patients remain alive after diagnosis with Paediatric-Low-Grade Glioma) and tumour progression (whether the tumour comes back/grows larger; requiring further treatment), no research to date has investigated PLGG prognostic variables (factors which may influence outcomes) relating to patient quality of life or physical/educational/social function. Given that 92% of patients will survive long into adulthood, it is crucial that the factors influencing subsequent patient function and quality of life are investigated and better understood.
    This project therefore seeks to expand current research into PLGG prognostic variables, by assessing potential associations between patient-related, tumour-related and treatment-related factors (eg. age at diagnosis, tumour tissue diagnosis, type of chemotherapy treatment) with conventional tumour outcome measures (patient survival and tumour recurrence) and with outcomes not previously analysed (PLGG survivor quality of life and function). Attempting to understand how tumour and treatment-related variables may influence or be associated with survivor quality of life and functional outcomes may offer new opportunities to stratify treatment according to 'risk' groups and could also offer an opportunity for preventative measures to be implemented to minimise the burden of the tumour and its treatment for PLGG patients to minimise adverse quality of life and functional outcomes.

    This study is comprised of 4 work packages: 1) biological data analysis of standard of care medical data 2) quality of life and functional questionnaires of patients (and their parent in consenting patients) 3) semi-structured interview of 10-20 patients aged 16-25 at least 5 years from last anti-tumour treatment 4) Patient and professionals workshops to discuss priority prognostic variables for future work.

  • REC name

    London - Camden & Kings Cross Research Ethics Committee

  • REC reference

    22/LO/0201

  • Date of REC Opinion

    27 May 2022

  • REC opinion

    Further Information Favourable Opinion