Patient reported function and symptom burden in breast cancer patients with CNS metastases.
Authors: Fleege Nicole Margo Grogan , 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: June 2022

e18635

Background: Central nervous system (CNS) metastases are associated with decreased quality of life for patients with metastatic breast cancer (MBC). Collecting patient-reported outcome (PRO) data can identify patient needs and inform patient-focused interventions. IMPACT the Brain is a care coordination program that aims to improve access to multidisciplinary care for patients with MBC and CNS metastases. The purpose of this study is to report baseline PRO data obtained as part of this program. Methods: Patients with MBC and CNS metastases are referred for enrollment in the program. PROs and caregiver assessments are collected on a voluntary basis at baseline and every 3 months. We performed a retrospective review of the baseline PRO data to determine: (1) type and severity of cancer-related symptoms reported by patients and (2) degree of burden reported by caregivers. The PROMIS Cancer Function Brief 3D Profile measures physical function (PF), fatigue (Fat), and social participation (Soc) in patients with cancer; 50.0 is the population mean and higher scores indicate a greater degree of a trait. The MD Anderson Symptom Inventory Brain Tumor (MDASI-BT) measures severity of cancer-related symptoms including interference with daily life. A score > 4 represents moderate symptoms and > 6 severe symptoms. The mean of the interference items represents overall symptom distress. The Short Form Zarit Burden Interview (ZBI-12) evaluates caregiver burden; a score ≥ 10 suggests mild burden while > 20 suggests high burden. PRO scores were summarized using descriptive statistics. Results: Sixty patients were referred and 54 (90%) enrolled; median age was 53 years (range 31-81). 47 questionnaires were collected at baseline from 32 participants. Average PROMIS T-scores were 37.0 for PF (31.9-51.2), 59.9 for Fat (48.9-66.8), and 42.3 for Soc (32.8-57.1). Participants reported greatest difficulty with performing heavy housework and completing usual work. The mean symptom severity score reported on the MDASI-BT (n = 20) was 2.82 (SD 1.56). Fatigue was the most severe symptom (mean 5.2, SD 2.7) and 25% of patients reported moderate symptoms. The mean interference score was 3.9 (SD 2.66), with 20% of patients reporting moderate and 30% reporting severe overall symptom distress. 65% of caregivers (n = 17) had at least mild caregiver burden on the ZBI-12. Of those, almost half (45.5%) had a score consistent with high burden. Conclusions: Collecting baseline PROs was feasible and provided valuable information about the patient experience. Symptoms experienced by patients with MBC and CNS metastases, particularly fatigue, interfere with ability to carry out usual activities. The distress caused by these symptoms may not correlate with the severity reported by the patient. Given the prevalence of burden experienced by caregivers, further work is needed to explore relationships among symptom distress, symptom severity, and caregiver burden.