Impact of patient symptoms and caregiving tasks on psychological distress in caregivers for head and neck cancer (HNC)

OBJECTIVE: To determine the association of caregiving task burden and patient symptom burden with psychological distress among caregivers of head and neck cancer (HNC) patients. METHODS: Adults with HNC and their primary caregivers were included. Patient symptom burden was assessed with the Vanderbilt Head and Neck Symptom Survey-2.0. Caregiving task burden was quantified as task number and task difficulty/distress using the HNC Caregiving Task Inventory. Psychological distress was measured with the Profile of Mood States-Short Form. Two-step clustering analysis was conducted for patient symptom burden, caregiving task burden, and psychological distress. Associations of the resultant clusters of task burden and patient symptoms with caregiver distress were tested using logistic regressions. RESULTS: Eighty-nine HNC caregivers and 84 patients were included. Among patients, two clusters of symptom burden were found (51% mod-high, 49% low). Among caregivers, two clusters of caregiving task burden (40% mod-high, 60% low) and caregiver psychological distress (40% mod-high, 60% low) were found. Caregivers with mod-high task numbers and task difficulty/distress reported higher levels of psychological distress. After controlling for caregiver number of tasks, respective difficulty/distress, and patient symptom burden, caregiver perceived task difficulty/distress had the strongest association with caregiver psychological distress (adjusted OR = 3.83; 95% CI, 1.0-14.64; P = 0.049). CONCLUSIONS: Psychological distress in HNC caregivers is associated with caregiving task burden, with caregivers experiencing high task difficulty/distress at greatest risk. Further study of the caregiver and task characteristics leading to psychological distress should inform supportive interventions for HNC patients and caregivers.