UCLA

PROBLEM: Informal caregivers of patients with chemotherapy-induced anemia (CIA) experience unaddressed burden. Previous research typically quantified burden with a score based on an instrument scale, but did not examine drivers or relative importance of clinical, demographic, and other characteristics on burden. As caregiver outcomes may be mediated by burden (a modifiable factor), research on predictors of burden are needed to identify points to target in designing interventions and policies.

METHODS: Data from a cross-sectional study conducted in eight oncology centers in the United States (3), Italy (3), and France (2) among 182 CIA patients and their caregivers were analyzed to assess burden and identify predictors of caregiver subjective burden, work productivity impairment (WI), activity impairment (AI), and time helping with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). Descriptive, bivariate, interaction, and linear regression analyses were conducted.

RESULTS: Caregivers reported a substantial amount of time assisting with ADLs and IADLs, perceptions of burden, and considerable WI and AI. Additionally, patients reported fatigue and less than average mental and physical health. Subjective caregiver burden was significantly predicted by caregiver AI and caring for more individuals than the patient. Significant predictors of WI included the caregiver experiencing role overload in terms of feeling stressed meeting caregiving and family/work responsibilities and caregiver AI. The significant predictor of AI was the caregiver experiencing a loss of self in terms of feeling a decline in privacy. Caregiver time spent providing assistance was significantly predicted by patient physical quality of life and greater dependence on caregiver for assistance with ADLs.

CONCLUSIONS: Data supported that patients with CIA experienced disease burden and their caregivers experienced burden related to providing care in the US, Italy, and France. The data on sociodemographics, burden, and predictors of this burden added to the knowledge base, provides potential targets for future interventions, development of supportive policies, and aids health care providers, patients, and caregivers in making more informed decisions to address patient and caregiver needs. Notably, clinical and social efforts to alleviate the identified burdens would also improve the quality of life of CIA patients and their caregivers and reduce negative impacts to employers and the economy related to reduced caregiver worker productivity.