Early Integrated Primary and Specialty Palliative Care for Glioblastoma. - Project Summary Glioblastomas (GBM) are aggressive, primary malignant brain tumors that are devastating for patients and caregivers due to high symptom burden, early physical and cognitive decline, caregiver support needs, and existential distress stemming from life expectancy from diagnosis on the order of months. Palliative care, defined by the National Quality Forum as “patient and family-centered care that optimizes quality of life (QOL) by anticipating, preventing, and alleviating suffering” improves QOL and reduces physical and psychological symptom burden for patients with serious illness. Caregivers of patients who receive palliative care have reduced distress, anxiety, and depression. Multiple oncological societies recommend that palliative care be integrated alongside usual oncology care within 3 months of diagnosis into the treatment plan of all aggressive cancers, including GBM. Yet in patients with GBM, palliative care referrals occur close to death, if at all. This care gap is likely due to the neurologic and neuropsychiatric symptoms, cognitive deficits, and accumulation of disability early in the disease course that are characteristic of GBM and differentiate the palliative care needs of patients with GBM from those in other advanced cancers. Clinicians specializing in palliative care (SPC) typically have limited training in neurology and neuro-oncology, leading neuro-oncologists to manage palliative care needs themselves (primary palliative care; PPC). However, time constraints and the prioritization of cancer-directed therapies limit PPC capacity. Because SPC consultation provides more advanced, comprehensive palliative care delivery, a model that expands PPC capacity and promotes earlier SPC referral is needed. Rita “Caroline” Crooms, MD, MPH, developed this proposed career development award to generate new knowledge about feasibility and acceptability of a novel model that embeds a PPC care navigator and a SPC clinician into a neuro-oncology practice. Using the Consolidated Framework for Implementation Research to inform successful intervention design, Dr. Crooms’ aims are: 1) analyze clinical trajectories in GBM and other high-grade gliomas to identify events (e.g. hospitalization) and patient characteristics (i.e., age, comorbidities) suggestive of higher palliative care needs to guide timing and content of intervention activities; 2) convene a stakeholder advisory board of patients, caregivers, and neuro-oncology and SPC clinicians to finalize the intervention protocol and implementation processes; and 3) pilot test the refined intervention in the neuro-oncology practice of a large, academic health system. Dr. Crooms with her expert mentors/advisors designed a career development plan to enhance her research skills and facilitate successful completion of the proposed work. This plan includes training on longitudinal data analysis; stakeholder engagement; and consensus and clinical trial methodology. This work will provide key preliminary data for Dr. Crooms to conduct a future R01 multisite clinical trial of the intervention to evaluate its impact on QOL in GBM – and advance her long-term goal to optimize palliative care delivery for people with brain tumors and their caregivers.
