Caregiver symptom burden: The risk of caring for an underserved patient with advanced cancer

Abstract

BACKGROUND The growing diversity of America’s population and the high burden of cancer-related symptoms reflect the need for caregiver research within underserved groups. In this longitudinal study, we assessed changes in symptom severity in caregivers and underserved minority patients diagnosed with advanced solid tumors being treated at public hospitals. METHODS 85 matched patient/caregiver dyads completed the M. D. Anderson Symptom Inventory 3 times during 20 weeks of chemotherapy. At each time point, we assessed symptom severity and interference with daily activities. Group-based trajectory modeling was used to classify caregivers into high or low symptom burden groups. RESULTS Sadness and distress were more prevalent among caregivers (P = .005). Symptom burden remained stable among caregivers in the high-symptom group (40%), whereas the low-symptom group (60%) showed a statistically significant decrease over time. Multivariate analysis found being a family-member caregiver (ADJ-OR 4.1; 95% CL 1.4, 11.6) and caring for a highly symptomatic patient (ADJ-OR 8.0; 95% CL 1.5, 41.4), rather than race, ethnicity, or sociodemographic characteristics, were significant predictors of the caregiver’s membership in the high symptom burden group. CONCLUSIONS Forty percent of the caregivers in this study were at increased risk for moderate to severe sadness and distress, which remained severe throughout the patient’s treatment course at public hospitals. To our knowledge, this study marks the first time that the concept of symptom burden has been used to measure caregiver burden, and the first time that symptom burden has been measured and documented in dyads of caregivers and underserved minority patients.

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