What are the Gaps in the Tools/Services for Adolescent and Young Adult High Grade Gliomas Patients?

Abstract

Introduction: High‑grade gliomas (HGGs) in adolescents and young adults (AYAs; 15–39 years) straddle pediatric and adult disease biology. Yet, current care systems are optimized for neither group. Fragmented services, delayed diagnosis, limited access to research and targeted therapies, and profound psychosocial disruption suggest current models are poorly aligned with AYA needs. This review synthesizes service gaps across the AYA HGG care continuum.

Methods: PubMed, Cochrane Library, and Web of Science were searched using glioma, AYA age, and service‑gap terms. Selected publications reported data or structured syntheses relevant to healthcare delivery, access, supportive care, or outcomes in AYAs with HGG. Drug‑efficacy trials without service data, single case reports, and non–data‑driven commentaries were excluded. Study quality and applicability to AYA care were appraised; findings were narratively integrated across predefined domains.

Results: Clinical trial eligibility criteria were often restrictive or age‑ambiguous. Treatment access was constrained by AYA underrepresentation in targeted (IDH‑, histone‑directed) studies, financial barriers and poorly structured pediatric–adult transitions. Diagnosis was frequently delayed by nonspecific early symptoms and specialist scarcity, while the absence of validated AYA‑specific molecular markers and limited advanced testing impeded risk stratification. Psychosocial support was also inadequate, with notable deficiencies in peer programs, psychoeducation, fertility counseling, and vocational resources. Regarding clinical presentation, AYAs experienced substantial neurocognitive burden, fatigue, visual change, and motor deficits that disrupted school and work.

Discussion: Improving outcomes for AYA with HGG requires coordinated, developmentally aligned reform. Key strategies include age‑inclusive, molecularly stratified trial designs with harmonized eligibility, automated multidisciplinary referral, patient‑centered consent, and routine tissue banking. Supportive services, financial navigation, transportation aid and adherence coaching can boost enrollment and retention. Clinically, structured pediatric–adult transition pathways and early palliative integration should be standard. Routine neurocognitive surveillance linked to scalable rehabilitation, academic accommodations, and return‑to‑work planning preserves function. AYA‑specific peer networks, staged psychoeducation, and proactive fertility and life‑planning counseling reduce isolation and strengthen engagement across care and research. Ultimately, this integrated model can guide evidence‑based improvement.

Conclusion: System‑wide redesign grounded in longitudinal, AYA‑focused research is essential to improve outcomes and quality of life for young people living with high‑grade gliomas.