Author: Lillie Pakzad-Shahabi

Working with Brain Tumour Patients to develop a New Personalised Treatment Approach for Brain Tumours

This blog post explores the potential of Functional Precision Medicine (FPM) for brain tumour patients, based on a recent Patient and Public Involvement (PPIE) event.

What is Functional Precision Medicine (FPM)?

FPM is a novel approach that uses a patient’s own tumour tissue to test the effectiveness of various drugs and drug combinations. This personalised approach aims to identify the most effective treatment options for each individual patient.

What did we do?

We held two interactive online Focus Group sessions with patients and caregivers. Participants were recruited through social media, word of mouth and a brain tumour charity. The sessions included presentations, group discussions, and question-and-answer format.  Following the sessions feedback was reviewed and analysed to identify key themes and recommendations. The sessions captured a diverse range of perspectives from the brain tumour community and provided a foundation for understanding patient and caregiver views on FPM.

What Patients Said:

  • Overwhelmingly Positive: Patients and caregivers were enthusiastic about the potential of FPM. They saw it as a “no-brainer” and expressed feelings of hope, excitement, and reassurance.
  • Improved Decision-Making: Participants believed FPM could empower them to focus on effective treatments and avoid unnecessary drugs. They envisioned using the test results alongside their doctor’s expertise for shared decision-making.
  • Quality of Life Focus: Some patients expressed hope that FPM could help them prioritize quality of life by avoiding treatments with limited benefits.

Concerns and Considerations:

  • “Zero Match” Fear: Patients worried about receiving negative results indicating no effective treatment options. Researchers suggest clear communication strategies to address this.
  • Tissue Availability: Concerns arose about the amount of tissue needed for the test, especially if future analyses are required. Researchers are exploring alternative sources like blood or cerebrospinal fluid.
  • Data Transparency: Participants desired clear information on the test’s accuracy and historical success rates to build confidence in the results.

Next Steps:

Ongoing PPIE work: We have an ongoing program of Patient and Public Involvement. Our next step is to work with professionals to understand their views, and then pull all of this together into a final report.

Overall, the study highlights the potential of FPM in brain tumour patients. Addressing patient concerns and ensuring transparency around data will be key to its successful implementation.

More info:

PEAR-GLIO clinical trial: https://clinicaltrials.gov/study/NCT06038760

Functional Precision Medicine: https://www.cell.com/cancer-cell/fulltext/S1535-6108(21)00616-4

Patient and Public Involvement: https://www.birmingham.ac.uk/research/activity/mds/mds-rkto/ppie/what-is-ppie

 

l.pakzad-shahabi@imperial.ac.uk
Neuro-Oncology Clinical Research Practitioner