Abstract Details

Title Caregiver Perceptions of End of Life Care in Patients with High Grade Glioma

Topic Neuro-oncology

Presentation(s) P1 - Poster Session 1 (12:00 PM-1:00 PM)

Poster/Presentation
Number 13-012

Objective To assess the end of life care provided to patients with high grade glioma via the perspective of their caregivers.

Background Patients dying from high-grade gliomas (HGG) often suffer from a high symptom burden in the end-of-life (EoL) phase. Since patients with HGG typically do not follow up with providers in the EoL phase, information about quality of life and symptom management is sparse. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess the quality of EoL care of HGG patients from the caregiver perspective.

Design/Methods Caregivers participated in the Toolkit After-Death Bereaved Family Member Interview (TIME survey). This validated survey assesses EoL care by calculating “domain scores” (DS) in five different areas: 1) physical comfort and emotional support, 2) advance care planning, 3) focus on the individual, 4) attention to family, and 5) coordination of care. Caregivers also rated aspects of care using a 10 point Likert scale.

Results In a prospective study, 40 of 55 enrolled family caregivers completed the interview a median of 26 days after death. 68% of caregivers were female. DS indicate the quality of care. (0 = no opportunity to improve care, 1 = care was always sub-optimal). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16) and coordination of care (0.11). Attention to family (0.25) was not as well rated. Caregivers rated the overall care 8.90 ±1.36/10 on a 0-10 scale.

Conclusions Caregivers reported a high overall satisfaction with EoL care provided, though attention to family could be improved. While previous research suggests the importance of good physician communication in allowing patients to die with dignity, more focus should be on the caregiver in the EoL phase to improve end of life care, caregiver burnout and bereavement.

Authors/Disclosures
John T. Fortunato, MD (Memorial Sloan Kettering) PRESENTER	No disclosure on file
Lonni Schultz, PhD (Henry Ford Hospital)	Dr. Schultz has nothing to disclose.
Joel N. Phillips, DO, FAAN (Trinity Health Physician Partners)	Dr. Phillips has nothing to disclose.
Tobias Walbert, MD, PhD, FAAN (Henry Ford Hospital Detroit)	Dr. Walbert has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Walbert has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Orbus Therapeutics. Dr. Walbert has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Springworks Therapeutics . Dr. Walbert has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Springworks Therapeutics . Dr. Walbert has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Alexion .