Some of the features that make CNS tumors unique include their typically catastrophic diagnosis, considerable symptom burden, significant cognitive/psychological burden, and their impact on family and caregivers.

Unlike the quality of life (QOL) trajectory observed for many patients with other cancers, patients with CNS cancers often experience a dramatic initial drop in QOL due to the catastrophic nature of the presenting symptom of the disease (eg, seizure, loss of peripheral vision). In addition, the patient is likely to undergo neurosurgery followed by other treatment and significant cognitive dysfunction within weeks.

“The cognitive and behavioral issues are very distressing, not just for the patients, but also for the families,” Dr Saria stated.


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A comment made by his research advisor summed up Dr Saria’s experience with patients with CNS tumor and their caregivers. When meeting a new patient, he would not able to distinguish the patient from the caregiver except for the scar on the patient’s head, and that overall, the caregiver will look worse.

Despite the significant need to introduce palliative care at the time of diagnosis, this should not affect whether or not the patient receives active treatment. Facilitating access to clinical trials is also critically important for these patients.

Reference

Saria MG. Navigating central nervous system tumors: screening, treatment, and post-treatment considerations. Oral presentation at: 2019 ONA Navigation Summit; June 13-15, 2019; Philadelphia, PA.