The National Palliative Care Research Center

Curing suffering through palliative care research.


R. Caroline Crooms MD, MPH

Assistant Professor

Icahn School of Medicine at Mount Sinai

Grant Year
Grant Term
2 years
Grant Type
Kornfeld Scholars Program

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.
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.