Abstract D083: Care burden of informal caregivers of African American cancer survivors
Authors: Schwartz Kendra , Mantey Julia , Ruterbusch Julie , Pandolfi Stephanie , Hastert Theresa A , Thompson Hayley , Beebe-Dimmer Jennifer , Schwartz Ann G 
Published: September 2020

For many cancers, African Americans are diagnosed at a later stage and have poorer cancer outcomes than whites. Based on few studies, informal caregivers for African Americans are nearly all female, less than 65 years old, and provide assistance mostly with Instrumental Activities of Daily Living (IADLs). We surveyed a larger number of caregivers than previous studies about their objective and subjective care burden. Informal caregivers were recruited by nomination from participants in the Detroit Research on Cancer Survivors study, a population-based cohort study of African Americans residing in metropolitan Detroit diagnosed with a primary invasive cancer of the breast, colon/rectum, lung or prostate since January 1, 2013. Caregivers completed a baseline survey after being nominated and consenting to participate, and are invited to complete annual follow-up surveys. The survey included items on demographics, assistance with activities of daily living (ADLs), assistance with IADLs, and subjective caregiver burden (using a validated Care Burden Scale). Baseline characteristics of the first 350 informal caregiver/survivor dyads are reported here. Approximately 82% of nominated caregivers chose to participate. Most (n=145) cared for a breast cancer survivor, followed by prostate (122), colorectal (42) and lung (40). Approximately one third of cancer survivors were diagnosed with Stage I disease, another third with Stage II, and another third with advanced disease. The average age at diagnosis was 57.9 years. Most caregivers (77.7%) were female, African American or multiracial (&gt;90%), completed education beyond high school (65.1%), were related to the survivor (90.0%), lived in same household or within 20 minutes (85.7%), and had at least one comorbidity (85.4%); 29.1% had four or more comorbidities. The average caregiver age was 52.5 years. About half (56.6%) were employed either full or part-time at the time of the survivor’s diagnosis. Caregivers spent between 6-9 hours/day, 5-6 days/week, on average, in care. Additionally, they spent about 8 hours per week driving and/or accompanying the patient to appointments. The most common ADL needs (~60%) provided by caregivers were transferring, climbing stairs and dressing. Most (70-90%) survivors received assistance with the specific IADLs of housework, laundry, shopping, cooking, and driving. The reported burden was “little to none” for most caregivers (78.7%), with those no longer providing care at the time of survey more likely to recall the least burden. Similar to other reports of cancer caregivers, the 350 caregivers for African American cancer survivors in this study were overwhelmingly female, related to the survivor and lived in close proximity. Our future research will focus on why most caregivers reported their caregiving burden as minimal despite the number of hours and amount of assistance provided. Additionally, changes in the caregiving experience will be studied as dyads are followed over time.

Citation Format: Kendra Schwartz, Julia Mantey, Julie Ruterbusch, Stephanie Pandolfi, Theresa A Hastert, Hayley Thompson, Jennifer Beebe-Dimmer, Ann G Schwartz. Care burden of informal caregivers of African American cancer survivors [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr D083.