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Abstract Details

Palliative Care Access in Patients with Prion Disease
Palliative Care
P3 - Poster Session 3 (11:45 AM-12:45 PM)
11-005
We systematically evaluated palliative care utilization and mode of delivery in a cohort of patients with prion disease. 
Timely access to palliative care, a specialty that focuses on improving quality of life for patients with serious or advanced medical conditions, is central to the care of patients with prion disease.
Clinical data were extracted from the electronic medical records of patients with definite or probable prion disease diagnosed and managed across a tertiary care health system.
174 patients with prion disease were identified. 165 (94.8%) patients experienced one or more symptoms/signs likely to benefit from palliative care. 113 (64.9%) patients received palliative care resources during the illness course, including hospice care (39.7%), palliative care consultation (14.9% inpatient, 6.9% outpatient), or both (3.4%). The most common reason that patients did not receive palliative care services was lack of referral by the diagnosing clinician (59.0%). Patients with multiple symptoms/signs likely to benefit from palliative care were more likely to receive palliative care services compared to patients with isolated or no symptoms/signs (OR = 4.24, 95%CI = 1.37, 13.03). Clinical presentations dominated by language impairment (OR = 8.18, 95%CI = 1.01, 66.36), the presence of behavioral changes (agitation/combativeness; OR = 2.53, 95%CI = 1.15, 5.55), and constipation (OR = 4.81, 95%CI = 1.01, 22.91) were independently associated with access to palliative care services.
More than a third of patients with prion disease did not receive palliative care services, although prion disease is a terminal and rapidly progressive disease and despite a preponderance of clinical features likely to benefit from palliative care in most patients. These findings highlight an opportunity to improve care of patients with prion diseases by improving access to comprehensive palliative care resources.
Authors/Disclosures
Roaa Zayat, MD
PRESENTER 		Dr. Zayat has nothing to disclose.
Yoav Piura, MD Dr. Piura has received personal compensation in the range of $500-$4,999 for serving as a Consultant for BMS. Dr. Piura has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Merck.
Brian Appleby, MD (University Hospitals Case Medical Center) Dr. Appleby has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Acadia. Dr. Appleby has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Ionis. Dr. Appleby has received personal compensation in the range of $0-$499 for serving as a Consultant for Sangamo. The institution of Dr. Appleby has received research support from CJD Foundation. The institution of Dr. Appleby has received research support from Ionis. The institution of Dr. Appleby has received research support from Alector. The institution of Dr. Appleby has received research support from CDC. The institution of Dr. Appleby has received research support from NIH. Dr. Appleby has received publishing royalties from a publication relating to health care. Dr. Appleby has received publishing royalties from a publication relating to health care.
Maisha T. Robinson, MD, MS, FAAHPM, FAAN (Mayo Clinic) Dr. Robinson has received publishing royalties from a publication relating to health care. Dr. Robinson has received publishing royalties from a publication relating to health care. Dr. Robinson has received personal compensation in the range of $500-$4,999 for serving as a Longitudinal Knowledge Assessment Question Approval Committee for the Hospice and Palliative Medicine MOC with American Board of Internal Medicine. Dr. Robinson has received personal compensation in the range of $500-$4,999 for serving as a Neuro SAE question writer with 好色先生. Dr. Robinson has received personal compensation in the range of $500-$4,999 for serving as a Guest Editor with Continuum. Dr. Robinson has a non-compensated relationship as a IDEAS Committee Member with American Neurological Association that is relevant to AAN interests or activities.
Gregory S. Day, MD, MSc, FAAN (Mayo Clinic) Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Arialys Therapeutics. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for DynaMed (EBSCO Health). Dr. Day has or had stock in ANI Pharmaceuticals. The institution of Dr. Day has received research support from National Institutes of Health / NIA. The institution of Dr. Day has received research support from National Institutes of Health / NINDS. The institution of Dr. Day has received research support from Amgen Pharmaceuticals. The institution of Dr. Day has received research support from AVID Radiopharmaceuticals. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Presenter at Annual Meeting (CME) with 好色先生. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Content Development (CME) with PeerView, Inc. Dr. Day has received personal compensation in the range of $5,000-$9,999 for serving as a Content Development (CME) with Continuing 好色先生, Inc. Dr. Day has received personal compensation in the range of $5,000-$9,999 for serving as a Content Development (CME) with Ionis Pharmaceuticals. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a 好色先生al Case Development + Presentation (video) with PeerDirect (P\S\L Group). Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Content Development / Presentation (non-CME) with MJH Life Sciences (NeurologyLive). Dr. Day has a non-compensated relationship as a Clinical Director with Anti-NMDA Receptor Encephalitis Foundation that is relevant to AAN interests or activities.