Project THRIVE

The Challenge

Life beyond a paediatric brain tumour should be about much more than survival; it should be about thriving. Indeed, quality of life (QoL) or health related quality of life (HRQoL), referred to herein as “QoL,” is of utmost importance when treating those diagnosed with a brain tumour in childhood (Pan-Weisz et al., 2018). Evidence highlights significant impacts of a paediatric brain tumour diagnosis on QoL in both the short- and long-term (Green et al., 2024a, 2024b; Lv et al., 2022; Macartney et al., 2014; Schulte et al., 2017; Veneroni et al., 2017; Verwaaijen et al., 2021) with individuals often “growing into deficit” (Aarsen et al., 2006) and experiencing progressive decline in QoL over time (Duckworth et al., 2015).

Extant evidence on QoL in this population is largely descriptive and little is known about how to improve QoL or the value of currently available interventions. The research that does exist (e.g., Barrera et al., 2021; Bonanno et al., 2024; Devine et al., 2014; Khaleqi-Sohi et al., 2022; Schulte et al., 2014) is fragmented, with siloed studies creating a disconnected evidence base (Barrera et al., 2021; Khaleqi-Sohi et al., 2022). This limits progress in developing meaningful, patient-centred interventions: “gaps in knowledge limit research potential, which directly impacts the development of interventions that could improve our QoL” (R. Taylor, personal communication, 2024). Despite longstanding calls for researchers to identify appropriate components of follow-up care (Hewitt et al., 2003), an urgent challenge remains to generate evidence-based, actionable guidelines for non- pharmacological interventions that improve QoL among those living beyond a paediatric brain tumour diagnosis.

By integrating patient voice and clinical insights, Project THRIVE will deliver real-world, actionable guidance for clinicians; evidence-based recommendations for future research; and a clear roadmap for improving survivor care through targeted QoL interventions. Thus, Project THRIVE is a transformational step toward understanding how to improve life beyond diagnosis and treatment, and helping patients move beyond survival and toward a life in which they thrive.

The approach

Delivery will involve two work packages: 1) a comprehensive systematic review of non-pharmacological QoL interventions and 2) novel qualitative data collection with long-term survivors of a childhood brain tumour.

Project THRIVE will synthesise and appraise literature on QoL in its broadest sense to ensure a thorough and encompassing strategy. A review of this nature will offer the most comprehensive study of QoL interventions among those living beyond a paediatric brain tumour diagnosis to date and will entail a novel attempt to integrate published evidence with narratives of paediatric brain tumour long-term survivors to evaluate QoL interventions.

We will address the following research questions:

• RQ1: What non-pharmacological interventions exist to improve QoL among those living beyond a paediatric brain tumour diagnosis?
• RQ2: What is the quality of the retrieved intervention studies?
• RQ3: Have interventions been efficacious or effective at improving QoL?
• RQ4: What QoL interventions do paediatric brain tumour survivors want and need?
• RQ5: How useful is the current evidence base for those with lived experience of a paediatric brain tumour?

The impact

This project has just been funded and will launch in June 2025.