A UK-based national survey has been conducted to help determine the experience of patients with brain tumours and their carers throughout the treatment pathway and to identify their views on potential service gaps.
The structured questionnaire was given at patient workshops across 30 counties and online through a charity newsletter. In total, 136 survey responses were received, representing patients with a variety of diagnoses and geographical locations.
The main themes identified included: “A perceived lack of information provision, a gap in post-discharge psychological and neuropsychological supports, and an unmet willingness for involvement in research”. The data will form the basis for informing future patient-centred service improvements and research.