Abstract Details

Title Caregiver Distress and Burden Over Time in Newly Diagnosed Gliomas

Topic Neuro-oncology

Presentation(s) S27 - Innovations in Neuro-oncology (2:00 PM-2:12 PM)

Poster/Presentation
Number 006

Objective Understand caregiver distress and its relationship to time burden in newly diagnosed gliomas.

Background Investigating caregiver distress and burden in gliomas is critical to develop interventions to improve caregiver support and experience.

Design/Methods IRB-approved prospective study of 99 caregivers of patients with newly diagnosed gliomas enrolled over 2.5 years. 35-item Caregiver Quality of Life in Cancer (CQOLC) (highest distress= 140) was completed at initial diagnosis, 3 months(mo), 6mo., and 12mo. post-diagnosis. We described the change in caregiver distress (CQOLC) over time, identified key burdens based on subsets of the CQOLC (emotion, disruptiveness, positive adaptation, financial), and documented time spent on patient care.

Results 80/99 caregivers completed a survey for >/= 1 time point: 63/99 (initial), 44/99 (3mo.), 44/99 (6mo.), and 21/99 (12mo.). 80 caregivers (60 female) included 52 spouses, 14 children, 9 parents, 5 siblings/friends. 63 were primary caregivers. Patients’ diagnoses: 63 glioblastoma, 13 anaplastic astrocytoma, and 4 low-grade glioma. Mean CQOLC scores did not significantly change from initial diagnosis (55), to 3mo. (52), 6mo. (59), and 12mo. (60) post-diagnosis (p-value=0.379). The most distressing aspect of caregiving was emotional burden at all time points. The proportion of caregivers spending >20hrs/week on care did not significantly change from initial (50%), to 3mo. (55%), 6mo. (51%), and 12mo. (40%) post-diagnosis (p-value=0.912). Caregivers who spent >20hrs/week on care had significantly higher distress scores than those who spent <20hrs/week at diagnosis (p-value=0.0008) and at 3mo. (p-value=0.015).

Conclusions Caregiver distress and time burden is substantial at the time of diagnosis and continues for 12mo. post-diagnosis. Caregivers who spend more time on patient care have higher levels of distress in the first 3mo. post-diagnosis. Early interventions to help caregivers cope with time and emotional burden, and minimize distress are needed.

Authors/Disclosures
Lauryn Hemminger (Strong Memorial Hospital) PRESENTER	Dr. Hemminger has nothing to disclose.
Chinazom U. Ibegbu, MD (Roswell Park Cancer Institute)	Dr. Ibegbu has nothing to disclose.
Jennifer N. Serventi, PA (University Of Rochester Medical Center)	Ms. Serventi has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Novocure.
Joy E. Burke, MD (University of Rochester)	No disclosure on file
Jessica F. Occhiogrosso (University of Rochester - Wilmot Cancer Center)	Ms. Occhiogrosso has nothing to disclose.
Benzi Kluger, MD, FAAN (University of Rochester)	Dr. Kluger has received personal compensation in the range of $0-$499 for serving as an officer or member of the Board of Directors for International Neuropalliative Care Society. The institution of Dr. Kluger has received research support from NIH. The institution of Dr. Kluger has received research support from PCORI.
Nimish A. Mohile, MD, FAAN	The institution of Dr. Mohile has received research support from Novocure.

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