Surgery, radiotherapy, chemotherapy, but now what? Exploring the rehabilitation needs of people with brain tumours in Ireland

In Ireland, about 480 people are diagnosed with primary brain tumours every year. Many more people develop secondary brain tumours arising from other cancers. Brain tumours can shorten life span and cause many problems including muscle weakness, speech difficulties, loss of mobility and independence, difficulties thinking and remembering, and epilepsy. These have profound effects on the lives of patients and their families. Research tells us that such problems can respond to rehabilitation, but there is a significant lack of rehabilitation services for people with brain tumours in Ireland. Our Public and Patient Involvement work with brain tumour survivors highlights how difficult it is to find and access rehabilitation services for their complex and lifelong needs.

We aim to explore and understand the rehabilitation needs of people with brain tumours, so that we can to guide the development of effective rehabilitation services for them in Ireland. To do this, we will analyse information from brain tumour databases and review previous literature and research on rehabilitation for people with brain tumours. We will conduct interviews with brain tumour survivors and their families to understand the difficulties they encounter and the services they would find helpful. We will survey the healthcare professionals who care for them, to get their perspectives on the challenges, strengths, and weaknesses of current services and how they may be improved.  Finally, we will invite patients with a new diagnosis of brain tumour at Beaumont Hospital to be part of a study where we will assess their symptoms and problems at three-month intervals for up to one year after diagnosis.

This project will give us the information we need to recommend changes to rehabilitation services so that people with brain tumours get the care they need for the challenges they face.

Other members of the research team include Mary O’Sullivan, PPI representative, Prof Frances Horgan and Dr Ailish Malone