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Purpose

Family caregivers (CGs) of individuals with cancer are increasingly relied upon to provide long-term, sometimes intense care, although their integration into clinical cancer care remains minimal. The Caregiver Advocacy, Research, and Education (CARE) Center is a novel nurse-led academic-clinical partnership to support family CGs of individuals with gynecologic cancer. This study aims to describe the implementation of the Center protocols and report metrics of CG needs and Center support.

Materials and Methods

The Center's goals are to identify, assess, and provide tailored support to CGs. Initially, Center protocols included assessment of CGs' self-identified distress (distress thermometer, 0 = no distress to 10 = extreme distress) and needs (yes or no). Tailored support on the basis of CG distress was provided by in-person and remote staff who provided complementary, concurrent support based on CG need: evidence-based self-management guides, self-management support, referral to specialty services. Center documentation was analyzed to describe Center reach and CG distress.

Results

From November 2019 to June 2023, CGs (n=1,250) were identified through referrals, new patient outreach, and inpatient visits. A total of 706 CGs (56.5%) were assessed through a needs-based assessment, and 515 (41.2%) CGs received tailored support. CGs were mostly men (53.0%) and the mean distress was 4.4/10 (standard deviation 3.1). CG distress was moderately associated with CG needs including maintaining emotional (ρ=0.40; P<0.001) and physical (ρ=0.31; P<0.001) health and managing patient symptoms (ρ=0.33; P<0.001).

Conclusion

Center protocols facilitate identification of high-need CGs within a cancer clinic. Future research will longitudinally evaluate the impact of Center protocols on CG and patient outcomes, incorporating updated assessment tools.

Read a Q&A about the study here.