Shared decision-making

Bottom line

Shared decision-making is a collaborative process in which patients and their care team make treatment decisions together — combining evidence with the person's values, central to navigating complex glioma choices. ## References & Trusted Sources The information in this library reflects the current understanding of gliomas as of its writing, drawing on authoritative medical sources and current classification standards. The following are reputable sources for further, trustworthy information. (Because medical knowledge evolves, always consult current resources and your care team for the latest information.) Government and major medical institutions - National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH) — information on brain tumors and neurological conditions. - National Cancer Institute (NCI), including the PDQ (Physician Data Query) summaries for adult and childhood brain tumors (such as adult central nervous system tumors, childhood astrocytomas, and other childhood gliomas) — comprehensive, regularly updated cancer information for patients and professionals. - American Association of Neurological Surgeons (AANS) — patient information on brain tumors and neurosurgical conditions. - Central Brain Tumor Registry of the United States (CBTRUS) — statistics on the incidence and outcomes of brain and central nervous system tumors. - StatPearls / National Center for Biotechnology Information (NCBI) Bookshelf — peer-reviewed, openly accessible medical reference articles. - Cleveland Clinic and Mayfield Clinic — patient-friendly educational resources on brain tumors and neurosurgical conditions. Patient organizations - American Brain Tumor Association (ABTA) — information, support, and resources for people affected by brain tumors. - National Brain Tumor Society (NBTS) — information, advocacy, research funding, and patient support. - Pediatric and diagnosis-specific foundations — organizations dedicated to childhood brain tumors and specific diagnoses (including those focused on diffuse midline glioma / DIPG), which provide specialized support to affected families. Peer-reviewed literature and classification standards - WHO Classification of Tumours of the Central Nervous System, 5th edition (WHO CNS5, 2021) — the current authoritative classification integrating histological and molecular features. - The Stupp protocol (foundational clinical trial establishing combined radiation and temozolomide for glioblastoma) and subsequent literature on glioblastoma treatment and outcomes. - The INDIGO trial and related literature on vorasidenib (IDH inhibitor therapy for certain grade 2 IDH-mutant gliomas), published in the peer-reviewed medical literature. - Literature on key molecular markers — including IDH mutation and the oncometabolite 2-hydroxyglutarate; MGMT promoter methylation; 1p/19q codeletion; and other markers central to modern glioma classification and treatment. - Literature on H3 K27-altered diffuse midline glioma / DIPG and on BRAF alterations (including KIAA1549::BRAF fusion and BRAF V600E) in pediatric and other gliomas. ### Important notes on using this library - This library is for education, not medical advice. It is intended to help patients, families, and others understand the language and concepts of gliomas. It does not replace professional medical advice, diagnosis, or treatment. Always consult qualified healthcare professionals for guidance about a specific situation. - Glioma is not one disease. The term covers a very wide range of tumors — from often-curable types (such as pilocytic astrocytoma) to among the most serious diagnoses (such as glioblastoma and diffuse midline glioma) — and the specific type, grade, and molecular features determine almost everything about behavior, treatment, and outlook. Information about gliomas in general may not apply to a particular tumor. - Statistics describe populations, not individuals. Survival figures and other statistics reflect what has happened, on average, in groups of people — often before the most recent advances. They cannot predict any individual's outcome, individual courses vary widely, and some people do better than the statistics suggest. Such figures should be interpreted cautiously and in personal context with the care team. - Decisions should be individualized and shared. The best decisions combine medical evidence and expertise with the person's own values, goals, and circumstances, through shared decision-making with the care team. - When to seek prompt care. Seek timely medical attention — or urgent care for severe or rapidly worsening symptoms — for new or rapidly worsening weakness or numbness; new or worsening seizures; a sudden severe headache or a significant change in headache pattern; a decline in alertness or new confusion; new vision changes; or, in children, persistent vomiting, unusual lethargy, developmental regression, or an abnormally increasing head size. Follow the specific guidance of your care team about what to watch for and how to reach them.