Project Description
Service Delivery Across Palliative Care Domains in High-Grade Glioma
WHO Grade III and IV gliomas (high-grade
glioma; HGG) are aggressive, primary malignant brain tumors with a devastating impact
on patients and families due to debilitating neurologic symptoms, early
cognitive and functional decline, and universally poor prognosis.
People with HGG have clear needs across
all 8 domains of palliative care as defined by the National Consensus Project
for Quality Palliative Care. Beyond end-of-life care, the domains of
communication (goals of care, prognosis), physical symptoms, (neuro)psychiatric
symptoms, social needs including caregiver burden, spiritual distress, cultural
differences, and ethical and legal issues can all contribute to poor quality of
life starting early in the course of HGG. Yet people with HGG are typically
referred to palliative care specialists near the time of death, if they are
referred at all. A potential key reason for late or no specialty palliative
care referral is
that HGG is distinct from other cancers
in requiring neurologist expertise in managing common neurological
symptoms and manifestations. While refractory symptoms (such as pain or
fatigue) are a typical indication for early specialty palliative medicine
referral for other cancers, HGG patients’ symptoms (e.g. seizures, headache)
largely align with neuro-oncology expertise and are not usually part of
specialty palliative medicine training and practice. Conversely,
neuro-oncologists receive little formal training in palliative care, so other
domains (e.g. communication skills for elicitation of patient goals of care and
values, laying the groundwork for a timely goal-concordant care plan up to and
including end of life), may fall outside their expertise. Development of a
tailored care model that integrates both primary palliative care (provided by
neuro-oncology teams) and specialty palliative care is thus essential to
adequately address the needs of this population.
To lay the groundwork for designing and
testing such a model, the overall objective of this project is to quantify and
analyze the primary and/or specialty palliative care utilization of two cohorts
of HGG patients and the extent to which care received conforms to National
Quality Forum guidelines for timing and comprehensiveness across palliative
care domains. I will do this by 1) measuring the extent, timing, and source (primary or specialty palliative care) of each domain of palliative
care delivered to HGG patients at Mount Sinai Health System and University of
California, San Francisco and 2) performing qualitative analysis of
documentation of serious illness discussions abstracted verbatim from patient’s
medical records, to a) assess relationships of documentation quality to
specialty palliative care involvement
and to hospice enrollment; and b) explore the texts for new themes on these
discussions.
Bio
R. Caroline Crooms, MD, MPH, received her BA from Swarthmore College and her MD from the University of California, San Francisco (UCSF), where she also completed her neurology residency. She completed her hospice and palliative medicine fellowship, as well as her MPH, at the Icahn School of Medicine at Mount Sinai. She is currently an Assistant Professor in the Department of Neurology and the Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai. As a neuropalliative medicine specialist, her research goal is to improve quality of life for people with primary malignant brain tumors and other serious neurologic illnesses through optimizing primary and specialty palliative care delivery.
Email: caroline.crooms@mssm.edu