The study looks at how people with a type of aggressive brain cancer (glioblastoma), and their carers, feel about the information provided when they are going through chemoradiotherapy.
The study found that the information currently given to patients and their families often feels too general and doesn’t prepare them well for the ups and downs of treatment. Both patients and carers said they felt confused, unprepared, and sometimes overwhelmed by the side effects, which were worse than expected.
The research was led by Sharon Fernandez, a radiographer specialising in brain cancer, who wanted to better understand how to improve support for patients. Earlier work on new radiotherapy treatments had shown a gap between what patients expected and what actually happened during treatment. This new study helps explain why that gap exists—often because information isn’t personalised enough.
By interviewing patients and carers at three points during their treatment, the team learned that everyone’s experience is different, and their needs change throughout chemoradiotherapy. Support and advice need to be tailored to each person’s situation.
The findings suggest we need:
- Better, more personalised information for patients and carers.
- Support materials that are given at the right time—not too early, not too late.
- Digital tools that allow patients to share how they’re feeling during treatment, so they can be given the right information for them.
This study will help improve care not just in Leeds, but across the NHS. It’s part of a wider effort to make sure patients are at the centre of their care.
The study is one of nearly 600 research papers written by staff at Leeds Teaching Hospitals this year! You can explore more at LTHT Publications – Leeds Libraries.