CaPaBLE: Comparing Patient and Caregiver Indices to Conventional QoL Measures in Patients with High-Grade Glioma


Session type:

Lillie Pakzad-Shahabi, James Tallant, Mary Wells, Matt Williams



High Grade brain tumours are rare, but are the leading cause of cancer death in the under-40’s. There is therefore a considerable focus on measuring and maintaining quality of life, both for patients and carers. Standard QoL assessment tools are time consuming and may not reflect an individual’s priorities; as a consequence, longitudinal QoL measures in brain tumour patients are often poorly completed. Previous work in patients with brain injuries, pain and other cancers have shown that asking patients for their concerns and asking them to rank them to generate a Patient Generated Index may provide an easier and more efficient way to gather patient concerns.

CaPaBLE develops and tests the applicability and performance of the Patient Generated Index (PGI) and Caregiver Generated Index (CaGI) in patients with high-grade glioma.


CaPaBLE is a multi-centre, longitudinal observational phase 2 clinical trial with a target of recruiting 80 patients with high-grade glioma and 50 informal caregivers.

QoL data will be collected at 6 time points over 6 months during initial treatment (baseline, wk2, wk6, 3mo, 4mo and 6mo). PGI and CaGI data will be taken alongside standard questionnaires (EORTC QLQC30 and BN20 for patients; CarGoQOL for caregivers) for initial assessment of outcome concordance between the assessment methodologies. Assessment timepoints are designed to coincide with routine clinical visits however, to facilitate completion, CaPaBLE allows participants to complete the assessments remotely either through an online portal or during a virtual consultation.


Between trial opening (June 2020), and time of submission, we have recruited 2 caregivers and 4 patients into CaPaBLE. First recruit is now approaching 3 month assessment.


CaPaBLE forms an initial feasibility study for the use of PGI and CaGI with patients and caregivers of High Grade brain tumours. A further, large scale validation study will be conducted to support their use within clinical practice to aid the widespread collection of routine QoL data within this patient group.

Impact statement

CaPaBLE is the first study using PGI and CaGI in the brain tumour population. This creates an opportunity to improve QoL tools that can then be used in routine clinical practice.