VOICE-GMB database (Valuing patient/caregiver Outcomes, Impact, Cost & Experience in Glioblastoma)
Glioblastoma (GBM), the most common primary brain tumour in adults, is associated with substantial economic and societal burden. While direct medical costs are well characterised, indirect costs and broader societal impacts remain underrepresented.
A questionnaire has been build and co-designed with patients and caregivers to understand the hidden costs (personal, familial, societal) of the glioblastoma burden for the patients and their families.
Anonymous survey covering 80 questions, hosted by Better World (RGPD, health data collection compliant)
Over 200 respondents obtained in October 2026, still collecting responses until December 2026.
Topics covered:
Profile and screening: patient/caregiver role, confirmation of diagnosis, date, gender, age, region (France), urban/rural, stage in the care pathway
Size and composition of the support network: number of people involved for more than 3 months, relationship to the patient, role
Psychosocial impact: social life, couple/intimacy, family life, mental health, relationships with relatives and friends, children
Professional impact and income: employment status at diagnosis, changes in work activity, income loss (by bracket), lasting impact on career (caregiver)
Autonomy: loss of the ability to drive and its consequences (dependence, extra costs, fatigue)
Caregiving burden: hours per day during the 3 most intense months, most exhausting tasks, caregiver’s health and duration of the impact, persistence after the patient’s death
Indirect costs and out-of-pocket expenses: financial stress, types of costs, non-reimbursed care (types, duration, annual budget by bracket), impact on housing, loans, insurance
Administrative recognition of disability (RQTH, AAH, etc.): application, approval, refusal, barriers, costs of delays
Support, isolation and access to community/primary care: feeling of being supported, support mobilized and support lacking, difficulty finding trained professionals, consequences, forgoing care
Priorities and advocacy: measures that would have helped most, open testimony, consent to reuse of responses
Preliminary mid-stage analysis will be presented at ISPOR 2026 on November 8-9th (Poster EE376):
"The Invisible Burden of Glioblastoma - Combining Literature Review with Patient and Caregiver Qualitative Insights"
C. Ma1, M. Joshi2, F. Bianic3 , S. Courtès4
1) Syneos Health, HEOR, London, UK. 2) Syneos Health, HEOR, Gurugram, India. 3) Syneos Health, HEOR, Paris, France. 4) Lab2BIOTECH, Marseille, France, corresponding author
We believe that greater adoption of societal-perspective research is needed to capture the full impact of GBM on patients, caregivers, families and society. VOICE-GBM aims to address this gap, we actively welcome opportunities for collaboration on further analyses and publications.
Please contact us: info(at)lab2biotech.com
We thank the patient's associations actively involved:
