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131 Background: Caregivers play a pivotal role for many patients with prostate cancer (PC), providing emotional and physical support and guiding medical management. A quantitative survey was conducted to assess the unmet needs of caregivers for patients with PC in the USA. Methods: A 30-minute online survey was administered anonymously to capture caregivers’ characteristics, caregiving roles/responsibilities, and emotional experiences. Caregivers for patients with non-metastatic and metastatic PC were recruited via direct outreach and social media in collaboration with a patient advocacy group. All participants provided informed consent. Results were aggregated in accordance with anonymity and confidentiality codes of conduct. Only non-hired caregivers of patients with metastatic PC were included in this analysis. Results: Between June and July 2024, 230 caregivers of patients with metastatic PC completed the survey. Caregivers were mostly White (53%), male (54%), the primary caregiver (77%), and lived with the patient (65%). 51% of caregivers responding to the survey were spouses/significant others (32%) or children (19%). Caregivers reported being significantly involved in the patients’ journey, with 82% attending doctors’ appointments, 77% providing emotional support, 76% participating in treatment decisions, and 73% helping with medication management. The level of involvement in some caregiver-reported roles/responsibilities differed by male and female caregivers. For the 188 caregivers that reported going to doctors’ appointments with patients, 69% raised health concerns the patient would not, 67% would ask questions the patient forgot to ask, and 49% would initiate topics the patient felt uncomfortable to raise. Overall, 23% of caregivers did not feel adequately supported with resources to manage patients’ PC treatments; this varied by race with 31% of Black/African American caregivers, 24% of White caregivers, and 11% of Asian or Pacific Islander caregivers feeling inadequately supported. Overall, 58% of caregivers were concerned that the right resources to help their patient might not exist; this varied by race with American Indian/Alaska Native caregivers feeling most concerned (82%) and White caregivers feeling least concerned (50%). Conclusions: Caregivers are essential partners in the treatment journeys of patients with metastatic PC, offering crucial insights into patients’ well-being and practical support to help ensure adherence to the prescribed treatment plan and ongoing whole-person care. However, caregivers express significant concerns regarding support and resources, with perceived differences varying by race/ethnicity. These research findings underscore the need for improved resource accessibility tailored to diverse caregivers participating in informed decision making with health care providers.
Published in: Journal of Clinical Oncology
Volume 44, Issue 7_suppl, pp. 131-131