Life-Changing Cognitive Rehab Trial for Child Brain Cancer Survivors at GOSH
Experts at the world-renowned Great Ormond Street Hospital (GOSH) have identified a critical gap in post-treatment care for children who have undergone brain cancer therapy. In response, they have developed and are now trialling a groundbreaking cognitive rehabilitation programme specifically designed to address the cognitive challenges these young survivors face.
Addressing a Critical Care Gap
Medical professionals at GOSH noted that within the NHS, there are currently no tested cognitive rehabilitation programmes available for children following brain tumour treatment. Survivors often endure a range of debilitating issues, including significant memory loss, attention deficits, and profound cognitive fatigue, which can severely impact their quality of life and development.
To bridge this care chasm, a dedicated team has created a new cognitive rehabilitation programme aimed at helping children and their families manage these post-treatment challenges. The initiative is currently being evaluated in a feasibility study involving a small cohort of children.
Sophia's Transformative Journey
One of the first participants is 11-year-old Sophia Chant from Leigh-on-Sea in Essex. Sophia's medical journey began at just five months old when she was diagnosed with hydrocephalus, a build-up of fluid on the brain. Transferred to GOSH for life-saving intervention, further investigations revealed she had a brain tumour.
"Having the opportunity to be part of this study has been life-changing," said her mother, Nina Chant, a 41-year-old forest school leader. "It's given us a way forwards as a family. It's helped Sophia understand her brain fatigue and problems with her memory, and her different feelings and emotions."
Sophia spent much of her early childhood in and out of hospital undergoing chemotherapy to shrink the tumour, multiple operations, and numerous follow-up appointments. Although she entered remission in 2017 and continues with regular check-ups, the cognitive after-effects persisted.
"It's given us all some good techniques for how to deal with these and also apply them in different situations such as at home and at school," Nina added. "The team was so kind and supportive, and we were able to join the sessions online and in-person, too. The study really took into consideration the whole family."
Structure and Goals of the Pioneering Trial
The study, which includes 36 children aged seven to 17, aims to assess the feasibility and acceptability of this new cognitive rehabilitation programme. Funded by the National Institute for Health and Care Research and the Success Charity – Life After Cure, the trial compares different approaches:
- Cognitive rehabilitation combined with cognitive fatigue management.
- Cognitive rehabilitation alone.
- Standard usual healthcare.
The findings from this initial study are intended to inform a larger, UK-wide trial and ultimately pave the way for establishing national cognitive rehabilitation services specifically for children and young people who have survived brain tumours.
Expert Insights and Future Implications
Dr Charlotte Malcolm, chief investigator and principal clinical neuropsychologist at GOSH, emphasised the programme's significance. "This is the first trial of its kind to explore cognitive rehabilitation tailored for children and young people following treatment for brain tumours in the UK," she stated.
"We hope the programme will empower young people and their families with tools to better manage the cognitive challenges they face after treatment and to improve their quality of life," Dr Malcolm continued. "National guidelines recommend cognitive rehabilitation, yet access remains limited due to a lack of research and funding, and practical barriers. We hope this trial will address this gap and lead to improved post-treatment care."
This innovative approach represents a hopeful step forward in paediatric oncology, focusing not just on survival but on ensuring a better quality of life for young survivors grappling with the invisible scars of their treatment.
