NOTQ-09 THE HOLISTIC BURDEN OF CAREGIVING IN CNS METASTASES: ASSESSING EMOTIONAL IMPACT, COMMUNICATION GAPS, AND QUALITY-OF-LIFE PRIORITIES
Nicole Willmarth, Upal Basu-Roy, Medha Deoras-Sutliff, Liz Frank, Melinda Freund, Christine Hodgdon, Miriam Kadosh, Salvatore La Rosa, Amy Marbaugh, Stephanie McCoy, Krissa Smith, Ann Steagall, Sarah Tuck, Kari Wojtanik, Debra Signer RobinsAbstract
Background
Brain metastases (BM) are the most common central nervous system (CNS) tumors in the U.S. It is estimated that more than 200,000 cases are diagnosed each year, placing a significant burden on caregivers. While clinical focus often remains on patient outcomes, caregiving spans logistical, physical and emotional support and requires a deeper understanding to improve care models. This study evaluates the unmet needs of caregivers for patients with brain metastases.
Methods
A survey was developed by the Metastatic Brain Tumor Collaborative with vendor, Ipsos. The 20-minute survey was conducted online between September and October 2025 for caregivers of adults with BM (N = 300). Respondents came from Ipsos’ panels and included caregivers for patients with lung, breast, melanoma, renal and colorectal cancers.
Results
55% of respondents said they are providing 30 or more hours of care per week. Duties include emotional support, healthcare assistance, and managing logistics like transportation. 85% reported that the emotional and mental health toll is substantial. While 72% said that the BM diagnosis brought them closer to their loved one, many experienced a mix of emotions including feeling “tired/exhausted” (27%) or “overwhelmed” (23%). Despite this, discussions regarding emotional support were comparatively less common than discussion on prognosis and treatment options. Caregivers expressed a strong desire for information on managing side effects (69%) and requested that healthcare teams explain medical terms so they’re easier to understand (60%). Furthermore, 57% want clinical discussions to be framed from a quality of life perspective.
Conclusions
Caregivers of patients with BM are facing a considerable burden. There is a critical need for providers to reinforce advocacy resources and proactively address the emotional and financial concerns of caregivers for patients with BM. Direct caregiver feedback provides valuable insight toward understanding the CNS/BM journey and resources needed to support caregivers.