Evaluating specialty referral, research involvement, and PROs in a CNS-involved metastatic breast cancer care coordination program.
Authors: Grogan Nicole Margo , Pierce-Gjeldum Donna , Swartz Leigh Klaus , Verbal Kait , Merajver Sofia , Friese Christopher Ryan , Kiyota Ayano , Heth Jason , Leung Denise , Smith Sean Robinson , Gabel Nicolette , Kim Michelle Miran , Morikawa Aki 
Published: September 2021

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Background: Central nervous system (CNS) metastases are associated with decreased survival and quality of life for patients with metastatic breast cancer (MBC). Multi-disciplinary care can optimize outcomes. This project aims to improve access to coordinated care for patients with MBC and CNS metastases while assessing patient-reported outcomes (PROs) in the context of the multidisciplinary care experience. Methods: Patients with MBC and CNS metastases are referred and offered to enroll in our care coordination program. A team of specialists (breast medical oncology, breast cancer genetics, radiation oncology, neurosurgery, neuro-oncology, physical medicine and rehabilitation (PM&R), neuropsychology, and palliative care) supports a dedicated program coordinator who provides navigation, education, specialty referral, and clinical trial screening. A unique intake form developed for the program creates personalized, coordinated, and expedited referrals. PROs and caregiver assessments are collected on a voluntary basis using the following validated questionnaires: PROMIS Cancer Function Brief 3D Profile, MD Anderson Symptom Inventory Brain Tumor (MDASI), and Short Form Zarit Burden Interview (ZBI-12), a screening tool for caregiver burden. Results: Since May 2020, 43 patients were referred and a total of 40 patients (93%) were enrolled – 2 (5%) declined due to perceived burden of participation and 1 (2%) died before enrollment. The majority of patients were White (n = 34, 85%). Median time to program intake was 1 day (range: 0-8 days). Of the 43 patients referred, 17 (40%) consented to research studies in the metastatic setting. 11 were for an interventional trial (65%), while 9 consents were for non-interventional studies (53%). In addition to the initially referred specialty, 56 referrals were made across 7 sub-specialties; 37 patients (66%) were subsequently seen by a sub-specialist, most commonly radiation oncology (n = 9), PM&R (n = 9), neuro-oncology (n = 8), and neuropsychology (n = 8). Of the nine patients seen by PM&R, 5 completed the PROMIS Profile (55%). Similar completion rates were seen for the MDASI (13 of 23 surveys given, 56.5%) and ZBI-12 (13 of 26 surveys given, 50%) questionnaires. Conclusions: Implementation of a care coordination program for patients with MBC and CNS metastases allows for improved access to care across sub-specialties and supports participation in clinical research for a group of cancer patients historically underrepresented in research studies. Though completion of questionnaires is optional in this program, the rate of completion raises the question of whether this patient population faces unique challenges that make it difficult to complete questionnaires that are often required in research studies. Funding source: National Comprehensive Cancer Network Oncology Research Program from financial support from Pfizer.