Abstract
BACKGROUND: Glioblastoma is the deadliest primary malignant brain tumor in adults with limited treatment options and an average survival time of 12-18 months in the United Kingdom. In addition, glioblastoma has a highly detrimental impact on physical, cognitive, and emotional well-being, leaving substantial unmet needs for patients and caregivers. This study aimed to identify unmet needs in people with newly diagnosed glioblastoma and opportunities to mitigate them. METHODS: Utilizing Delphi methodology, an initial roundtable discussion with patient advocacy experts from 5 brain tumor organizations in the United Kingdom informed the development of 2 rounds of surveys across 9 domains (diagnosis, treatment, integrated care, support beyond treatment, quality of life, access to new treatments, access to trials, measures to ease the burden, and impact of COVID-19). Consensus was predefined as ≥70% agreement. RESULTS: A total of 17 Delphi panelists (glioblastoma patients, caregivers, and patient representatives) completed the first round of questionnaires and 26 completed the second. Consensus was reached on 16/21 questions (76.2%) and 7/9 domains. Panelists reached a consensus on key questions including the high frequency of diagnosis via emergency departments, the lack of effective personalized treatments and holistic care, the high caregiver burden, the lack of awareness and availability of access to clinical trials, and the negative impact of COVID-19 on glioblastoma care. CONCLUSIONS: Significant unmet needs exist for newly diagnosed glioblastoma patients in the United Kingdom, highlighting the demand for increased research funding, comprehensive patient care, caregiver support, enhanced awareness and access to clinical trials, and new treatments.