Abstract 6304: Seizure self-report and monitoring: Agreement between patient and clinician report and implications for care in patients with IDH-mutant and IDH-wild type gliomas
Authors: Miller Hope , Grajkowska Ewa , Acquaye-Mallory Alvina , Choi Anna , Reyes Jennifer , Gilbert Mark R. , Avila Edward K. , Armstrong Terri S. , Vera Elizabeth 
Published: March 2024

Primary brain tumor (PBT) patients commonly experience seizures, which can be measured and monitored by a variety of tools. Here, we explore the concordance between 2 tools and their use in reporting seizures over time among PBT patients enrolled in a natural history study (NCT02851706, PI: T. Armstrong). Patients complete the M.D. Anderson Symptom Inventory - Brain Tumor (MDASI-BT), which measures symptom severity (including seizure) within the last 24 hours from 0-10; and, as part of the same visit, pairs of clinicians and patients complete the Seizure Control Composite Index (RANO-SCCI), which includes the questions ‘Have you ever had a seizure’ (RANO-SCCIQ1) and ‘Have you had a seizure since your last clinic visit’ (RANO-SCCIQ2). Responses to each measure are reported in aggregate and by IDH status. Participants included 89 patients with gliomas who were primarily white (84%) males (62%) with a median age of 48 years (range: 27-78) and KPS ≥ 90 (85%). Based on patient reports, 65% endorsed ever having a seizure (RANO-SCCIQ1), 17% had a recent seizure (RANO-SCCIQ2), and 12% had a seizure within the last 24 hours (MDASI-BT). For the RANO-SCCIQ1 data, patients and clinicians generally agreed except for 6 pairs (7%) where clinicians indicated a seizure but patients did not. Of the 59 who reported recent seizures (RANO-SCCIQ2), two pairs (3%) disagreed, with patients indicating a recent seizure but clinicians not endorsing a seizure had occurred. Good overall agreement (86%) was observed between the RANO-SCCIQ2 and MDASI-BT for both clinician and patient responses, with 3 and 2 paired disagreements respectively, in which seizures were indicated in the last 24 hours but not recorded as a recent seizure on the (RANO-SCCIQ2). Comparing clinician report of seizures in those with IDH-mutated (n=39) to IDH-wildtype (n=15) tumors, 85% (33/39) versus 47% (7/15) reported ever having a seizure and 7 of 33 (21%) with IDH-mutant and 1 of 7 (14%) with IDH-wild type (IDH-WT) tumors respectively reported a seizure since the last visit. Disparities in recognition of seizures between patient and clinician highlights a need for patient education to increase awareness of events and recognition of ongoing risk. Although those with IDH-mutated tumors are at higher risk of having seizures, nearly half of those with IDH-WT reported ever having seizures, underscoring the need for all patients to be educated on recognizing and assessing seizure symptoms.

Citation Format: Hope Miller, Ewa Grajkowska, Alvina Acquaye-Mallory, Anna Choi, Jennifer Reyes, Mark R. Gilbert, Edward K. Avila, Terri S. Armstrong, Elizabeth Vera. Seizure self-report and monitoring: Agreement between patient and clinician report and implications for care in patients with IDH-mutant and IDH-wild type gliomas [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 6304.