35 Access to Vorasidenib for Low-Grade Glioma in the UK: Voices of Patients, Carers and Clinicians

Clicks: 16
ID: 326749
2026
Free PDF
Article Quality & Performance Metrics
Overall Quality
Not rated
Combines reader engagement with the AI quality analysis. This article has not been analysed, so there is no overall score — reader engagement is measured and shown alongside.
AI Quality Assessment
Not analyzed
Readership in this journal
Steady

Ranked #223 of 287 articles by views in journal of neuro-oncology

Most read Least read

Bar heights use a square-root scale. Only the 120 most-read articles are drawn; the journal has 287 in total.

Mint this article as an NFT
Not yet minted

Create a permanent, verifiable on-chain record of this article on the Scimatic Network. The NFT is held in your Journament account, and you can withdraw it to your own wallet at any time.

5 SUSD one-off · no wallet required
Sign in to mint
Abstract
Abstract Introduction Low-grade gliomas (LGG) often affect younger adults with patients often experiencing prolonged uncertainty, cognitive difficulties, and loss of independence. Methods Following a draft decision by the National Institute for Health and Care Excellence not to recommend vorasidenib for NHS use, The Brain Tumour Charity conducted an online UK-wide survey to capture community perspectives on access, unmet need, and lived experience. The survey, open from 15 October to 22 November 2025, received 1,316 responses. Of these, 73% were from individuals affected by LGG, including patients and carers. Quantitative questions assessed perceived unmet need and support for NHS access, while qualitative free-text responses were analysed thematically. Results Support for NHS access to vorasidenib was almost unanimous (99%). A majority (86%) identified an unmet clinical need in LGG, referring to decades of limited innovation and reliance on invasive treatments including surgery, radiotherapy and chemotherapy. Qualitative analysis revealed four dominant themes: (1) hope associated with the first meaningful therapeutic advance in 25 years; (2) preservation of quality of life and independence; (3) frustration with systemic neglect and perceived inequity compared with other cancers; and (4) ethical and financial injustice. Patients and clinicians emphasised the value of delaying radiotherapy and chemotherapy, minimising cognitive harm, and reducing burden on NHS services through an oral, well-tolerated treatment. Conclusions These findings highlight a disconnect between standard cost-effectiveness assessments and outcomes that matter most to patients living with LGG. Incorporating lived experience, quality of life, and long-term societal impact into decision-making is essential to ensure equitable access to innovation in neuro-oncology.
Reference Key
openalex_W7204464135 Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors Rachel Roberts, Shannon Winslade, Clare Jackson, Anita Harries, Kiran Cheema, Cameron Miller
Are you one of these authors? Claim your profile
Journal journal of neuro-oncology
Year 2026
DOI
10.1093/neuonc/noag172.015
URL
https://doi.org/10.1093/neuonc/noag172.015
Keywords Keywords not found

Citations

No citations found. To add a citation, contact the admin at info@scimatic.org

Comments

No comments yet. Be the first to comment on this article.