Communication of tumor testing and molecular results to patients and caregivers in glioblastoma: A national survey.

Abstract

e14041 Background: Tumor testing and molecular characterization are essential for personalized care in glioblastoma (GBM), informing treatment decisions and clinical trial eligibility. However, it is unclear whether patients and caregivers who are informed that testing occurred also report receiving explanations about tumor type and molecular findings. Methods: We conducted a cross-sectional analysis of a national, patient-led survey assessing GBM care experiences in the United States. Adult patients with GBM and caregivers responding on their behalf were included (n = 519). The primary endpoint was reported explanation of tumor types and mutations among respondents informed that tumor testing occurred; a secondary endpoint was reported communication regarding tumor tissue storage for future analysis. Cognitive recall risk was classified as elevated among respondents reporting neurologic symptoms associated with impaired recall (confusion, memory problems, language disturbance, or seizures) at diagnosis or, for current patients, at survey completion. Associations with age at diagnosis (<40, 40–64, ≥65) and treatment setting (NCI-designated vs non-NCI centers) were evaluated using chi-square or Fisher’s exact tests, as appropriate. Sensitivity analyses examined associations between “Not sure” responses, respondent type, and cognitive recall risk. Results: Among respondents informed that tumor testing occurred (n = 345 [20.6% patients, 79.4% caregivers]; 66.5% of all respondents), 77.1% reported that tumor types and mutations were explained, while 22.9% reported no explanation. Explanation rates varied by age at diagnosis (p = 0.008), decreasing with increasing age, and by treatment setting, with higher rates at NCI-designated versus non-NCI centers (80.8% vs 73.2%; p = 0.009). Communication regarding tissue storage varied more strongly by care setting; respondents treated at NCI-designated centers were more likely to report being informed (39.3% vs 22.1%; p < 0.001). A modest age-related difference was observed (p = 0.044), with tissue storage awareness highest among respondents aged <40 years (43.6%), compared with 40–64 years (29.2%) and ≥65 years (25.7%). Uncertainty (“Not sure”) regarding whether tumor testing occurred was not associated with respondent type or cognitive recall risk (both p > 0.20). Conclusions: Awareness that tumor testing occurred does not consistently translate into reported communication about tumor biology among patients with GBM and their caregivers. Communication gaps are more pronounced outside NCI-designated centers and among older patients and are not explained by recall limitations. These findings highlight a measurable gap in communication of molecular testing and tissue preservation processes and support efforts to improve communication, particularly in community oncology settings.