100310- COT-27 UNDERSTANDING THE BURDEN OF MIDH1/2 DIFFUSE GLIOMA AND THE COMPLEXITY OF NAVIGATING THE PATIENT PATHWAY: INSIGHTS FROM PATIENTS AND CAREGIVERS
Bibliographic record
Abstract
Abstract Diffuse gliomas with mutations in isocitrate dehydrogenase 1/2 (mIDH1/2) are characterized by a slow-progressing, yet life-limiting, disease predominantly in young people. Herein, we report interim findings from a qualitative study to describe the mIDH1/2 diffuse glioma patient pathway, experience of the disease, and treatment approaches. Patients, caregivers, and patient-association group (PAG) representatives undertook individual interviews, with patients also completing standardized exercises as pre-work. Materials were developed in collaboration with the International Brain Tumour Alliance. Patients were aged ≥12 years with mIDH1/2 glioma, had their last resection ≥6 months before enrollment, and were either undergoing active observation or receiving chemotherapy/radiotherapy. Caregivers were living with the patient. PAG representatives were active members of a brain tumor PAG. From November 2023 to March 2024, 30 patients (Australia: n=10; China: n=6; France/UK: n=5 each; Canada/Japan: n=2 each), two caregivers (China/Australia: n=1 each) and one PAG (UK) participated. Median age of patients was 41.5 years. There were 17 astrocytoma and 13 oligodendroglioma diagnoses. Presentation symptoms, circumstances of diagnosis and treatment, access to care, and navigation in the healthcare system differed per patient and within countries. Surgical resection was perceived as a crucial stage, both feared and desired. A second opinion was more often sought for surgery than for subsequent treatment approaches. Patients undergoing chemotherapy/radiotherapy (n=17) or active observation (n=13) expressed substantial physical, socioeconomic, financial, and psychological burden. Patients receiving active observation experienced strong and ongoing anxiety, as the uncertainty of tumor recurrence took a toll on their emotional wellbeing in the long term. The experience of people living with mIDH1/2 diffuse glioma is heterogeneous regarding their pathway and complexity navigating the healthcare system, with a substantial psychological and socioeconomic impact. Improved education, as well as facilitating early navigation and prioritizing shared decision-making along the disease pathway, will better support people living with mIDH1/2 diffuse glioma.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.002 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".