This clinical trial is now closed
Brain tumours are the leading cause of cancer death in the under-40s. Even with all the current treatment opportunities available, survival from this illness is still poor. With this in mind, a patient's quality of life - their overall function and well-being - should be a focus in treatment decision making, as quality of life has been shown to play an important role in overall outcome. There are specific 'tools' in the form of questionnaires to measure quality of life, however, those currently available are time consuming and burdensome. Moreover, "quality of life" is a difficult concept to measure as its meaning may be different to different people. Furthermore, the impact on caregivers' quality of life - notably in time, financial concerns and personal health consequences should not be forgotten about.
The purpose of this study is to identify whether the patient generated index (PGI) - a tool designed to document quality of life concerns in a more personalised manner as they are stated by the individual - is feasible in the brain tumour population (patients and caregivers). We will ask patients to complete both standard validated questionnaires as well as the patient generated index (PGI) and we will use the same process to assess quality of life of their main caregiver - a method we are terming the Caregiver Generated Index (CaGI). The intention is then to compare the results of PGI and CaGI to the existing standard quality of life questionnaires to get an understanding of how well they capture the impact of living with this new diagnosis. We also hope that the more patient-centred nature of PGI might elicit different concerns, and make it easier to act on them.
The study has now closed as in analysis & write-up. Early results have been presented at BNOS (2021 and 2022) and EANO (2022).