Abstract Details

Title Prognostic Awareness and Illness Understanding in Patients with Malignant Glioma and their Caregivers

Topic Neuro-oncology

Presentation(s) S30 - Brain Cancer: From Epidemiology to Quality of Life (4:14 PM-4:25 PM)

Poster/Presentation
Number 005

Objective To develop a better understanding of prognostic awareness, treatment goals, and communication preferences among patients with malignant gliomas and their primary caregivers.

Background Malignant gliomas (MGs) are rapidly progressive, incurable tumors. Patients with glioblastoma, the most common MG, have a median survival of approximately 14 months when treated aggressively. Despite this poor prognosis, data are lacking on patients’ and caregivers’ illness understanding, treatment goals, and communication preferences. We assessed PA in patients with MG and their caregivers 3 months post-diagnosis.

Design/Methods We conducted a prospective study in patients with MG and their caregivers. At 3 months post-diagnosis, we administered to patients and caregivers the Prognosis and Treatment Perceptions Questionnaire, which assesses illness understanding, treatment goals, and likelihood of cure.

Results At 3 months post-diagnosis, 82.9% (68/82) of patients and 81.3% (52/64) of caregivers reported that knowing prognosis is “extremely” or “very” important to them, yet only 42.6% (35/82) of patients and 60.9% (39/64) of caregivers reported accurate PA (defined as responses of “unlikely,” “very unlikely,” or “no” chance of cure). 46.3% (38/82) of patients and 46.9% (30/64) of caregivers reported that their oncologist’s primary goal was to extend life as long as possible, while 25.6% (21/82) of patients and 10.9% (7/64) of caregivers stated that their oncologist’s goal was to cure their cancer. Patients’ primary goal was most frequently curative [40.2% (33/82)], while caregivers most often presumed that patients’ primary goal was to extend life as long as possible [43.8% (28/64)].

Conclusions Patients with MG and their caregivers report that PA is important, but most patients and, to a lesser degree, caregivers have inaccurate PA. Additionally, patients’ goals of treatment often differ from caregivers’ perceptions of patients’ goals and from their oncologists’ presumed goals. Further investigation of interventions to improve communication about prognosis among patients with MG, their caregivers, and their oncologists is warranted.

Authors/Disclosures
Deborah Forst, MD PRESENTER	Dr. Forst has stock in Eli Lilly. Dr. Forst has received research support from Conquer Cancer Foundation of the American Society of Clinical Oncology. Dr. Forst has received research support from Palliative Care Research Cooperative Group. Dr. Forst has received research support from American Cancer Society Institutional Research Grant.
	No disclosure on file
	No disclosure on file
	No disclosure on file
Areej El-Jawahri	Areej El-Jawahri has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Incyte Corporation.
	No disclosure on file
	No disclosure on file

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