Pediatric Glioma Learning Project

Pediatric low-grade glioma (pLGG) is the most common type of solid tumour of the central nervous system in pediatrics, with an estimated Canadian incidence of 1.41 cases per 100,000 person years. Some children with pLGG can be cured with surgery, depending on the location and features of the tumour. However, many children will experience a chronic disease course requiring chemotherapy and/or targeted treatments, and sometimes radiotherapy. Treatment of this condition is associated with challenges for patients, their families, and the health system.

CADTH is using a collaborative approach to explore the potential of using real-world evidence to support decision-making for pLGG. CADTH coordinated a multi-stakeholder meeting to learn about potential measurable indicators and outcomes that different stakeholders deemed important for their decision-making needs relating to the care of patients with pLGG in Canada.

The methods and learnings from the multi-stakeholder engagement process have been summarized into 3 documents.

1. Multi-Stakeholder Dialogue Lessons Learned Report: This document summarizes the multi-stakeholder meeting content, including the key findings from the literature on pLGG, the key findings from the pre-meetings with participants from the patient community and health care providers, information shared by Canadian registries, and learnings from the multi-stakeholder dialogue.
2. Multi-Stakeholder Dialogue Methods and Practice Report: This document describes the methods of engagement and analysis of the findings of the multi-stakeholder dialogue process.
3. Pre-Meeting Material: This PowerPoint presentation and glossary were circulated to meeting attendees one week before the multi-stakeholder meeting and were discussed during the meeting.

Next Steps

The multi-stakeholder dialogue provided important insight into measurable indicators and outcomes that stakeholders consider important for decision-making about optimizing care for pLGG. These learnings will inform the development of a protocol to conduct a retrospective analysis. The analysis will use available registry data from the Pediatric Oncology Group of Ontario Networked Information System to describe the patient population, processes of care, and outcomes for pLGG in a Canadian context. The learnings from the multi-stakeholder dialogue process for pediatric low-grade glioma will also be used by CADTH to inform the development of guidance on multi-stakeholder dialogue.