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New Research Shows How Patients with Brain and Spine Tumors Are Impacted throughout Their Cancer Journey

, by Kristin Odom, NCI-CONNECT Communications Editor

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Credit: NCI-CONNECT Staff

Five nurses attended a conference to share data from the Natural History Study, which aims to better understand brain and spine tumors and uncover areas for further research. 

The NCI Center for Cancer Research's Neuro-Oncology Branch (NOB) research nurses and nurse practitioners provide care for our brain and spine tumor patients. They participate in research with the aim to improve the lives of their patients. At the 26th Annual Meeting of the Society for Neuro-Oncology from November 18 to 21, there were five presentations by NOB nurses who shared Natural History Study (NHS) data during the four-day event. Patients participate in the NHS by visiting the Neuro-Oncology Clinic for exams, testing, and outcomes surveys to better understand central nervous system (CNS) tumors and uncover areas for further research. Summaries of the NOB nurses' presentations are provided below.

Poster Presentation: A Descriptive Analysis of Gliomatosis Cerebri Cases, Compared According to IDH Status

Presenter: Lisa Boris, Nurse Practitioner

Gliomatosis cerebri is no longer recognized as a histopathologic-defined diagnosis. The purpose of this report was to describe the clinical, imaging, patient-reported outcomes, and pathologic characteristics of clinically-defined cases from a large NHS cohort of 769 cases. Within the NHS cohort, 17 patients presented with primary gliomatosis cerebri, while two developed gliomatosis cerebri after treatment.

Patient-reported outcomes at time of last clinical assessment revealed patients with gliomatosis cerebri to be highly symptomatic with mean overall symptom burden, depression, and anxiety higher than our overall glioma population. Patients with gliomatosis cerebri have a varied clinical course mandating further investigation to enable better prognostic definition to refine treatments based on the varying clinical and molecular characteristics and to improve approaches to patient care.

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Poster Presentation: Symptom Onset to Time of Diagnosis in Primary Central Nervous System Tumor Patients: A Review of Findings from the NOB-NHS

Presenter: Matthew Lindsley, Research Nurse

Prior reports suggest that the low prevalence of primary CNS tumors and the health care setting where patients seek care can contribute to diagnostic delays, potentially affecting prognosis. This descriptive report highlights findings from patient-reported data at presentation collected from a sample of 623 primary CNS tumor patients from the NHS.

In conclusion, tumor location, grade, patient age, and health care setting were associated with the time from clinical presentation to diagnosis. Patients had multiple symptoms prior to diagnosis. Development of aids providing guidance on diagnostic evaluation and treatment to front-line health care providers is warranted.

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Poster Presentation: Congruence Between Provider Reported Performance Status and Both Objective and Perceived Cognition in a Glioma Population

Presenter: Marissa Panzer, Nurse Practitioner

Karnofsky performance status (KPS) scale, a clinician-reported measure, is used to assess patients’ functional ability and as a metric for trial eligibility. Glioma patients often have a degree of neurologic deficit, which can affect performance status. There is little research comparing KPS, patient-reported cognitive outcomes, and objective cognitive outcomes. Two hundred and seventy-three primary brain tumor patients enrolled in the NHS were included in this report. We evaluated Pearson correlations between KPS, MDASI-BT cognitive symptom factor, NeuroQoL Cognitive Function t-score, EQ-5D-3L index score, and objective MoCA test.

These data demonstrated that perceived cognitive testing was associated with poor KPS but may also occur in those with good performance status. The results underscore the need for alternative measures of cognitive functioning to further explore the impact in those with good KPS and the use of the MoCA test in a larger sample.

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Poster Presentation: Patient-reported Symptom Burden and Interference: A Comparison Between COVID-19 Pandemic Year and Normative Data in Patients with Central Nervous System (CNS) Tumors

Presenter: Tina Pillai, Nurse Practitioner

Patients with CNS tumors are highly symptomatic, causing interference with activity and worse quality of life. Social distancing due to the COVID-19 pandemic increased demands on the patient, caregivers, clinicians, and health care system. The NHS systematically collected patient-reported outcomes from a sample of 178 primary brain and spine tumor patients to provide insight into how these challenges influenced symptom burden and interference during the COVID year. Patient and disease characteristics, as well as patient-reported symptoms and interference and general health status, were compared.

These findings support the concern that CNS tumor patients remained highly symptomatic with significant impact on health-related quality of life during the COVID year when access to care may be more limited. Clinicians should develop timely individual care plans to help brain tumor patients navigate their disease course. Evaluation of risk associated with more severe symptoms and functional limitations is ongoing.

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Poster Presentation: Mood Disturbance in Patients with Central Nervous System (CNS) Tumors During the COVID-19 Pandemic

Presenter: Lily Polskin, Nurse Practitioner

Primary CNS tumors are associated with uncertainty, likely contributing to mood disturbance that is common throughout the disease trajectory. The intersection of the COVID-19 pandemic with a CNS tumor diagnosis may further impact the anxiety or depression experienced in this population. This study assessed key anxiety and depression symptoms in patients with CNS tumors prior to and during the COVID year with a sample of 178 primary brain and spine tumor patients from the NHS.

Patients with CNS tumors are at risk for significant symptoms of depression and anxiety. This risk was heightened during the COVID year when access to outpatient care may be more limited. Further evaluation of clinical factors associated with risk is underway. These findings highlight the need for assessments and interventions that can be administered through telehealth to address the mental health needs of this vulnerable population.

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