480 people are diagnosed with a primary brain tumour every year in Ireland. 9% of people with other cancers will develop secondary tumours in the brain. Brain tumours can shorten lifespan and cause neurological disability that profoundly impacts functional ability and quality of life. Rehabilitation can improve functional prognosis (motor and cognitive) and quality of life in people with brain tumours. However, research and experience consistently show that people with brain tumours do not get the opportunity to access rehabilitation.
The aim of this study is to understand the rehabilitation needs of people with brain tumours in Ireland. This study proposes four interlinked Work packages: A scoping review to examine international evidence on current rehabilitative interventions and the desired outcomes of early and ongoing rehabilitation;
A cross-sectional survey to assess healthcare professionals’ perspectives on current rehabilitation provision and needs of survivors of brain tumour and their families;
An epidemiological study, profiling characteristics of brain tumour survivors to understand the severity and complexity of symptom burden, using existing databases; A prospective study to measure the evolution of rehabilitation needs of people with brain tumours over a one-year period after diagnosis, involving primary data collection on physical and cognitive disability, symptom burden, health-related quality of life and carer support needs. An embedded qualitative study will capture the experiences of 30 brain tumour survivors and their carers. The study will adopt Action Research, to enable the team to respond to presenting problems and emergent knowledge as they are identified through standardised prospective re-assessment over the year following brain tumour diagnosis. The results will improve care by measuring the unmet need and providing a basis to prioritise the supports required and encourage healthcare providers and policy makers to adequately resource neuro-rehabilitation for people with brain tumours.
