Background: Caregivers provide vital support that affects important patient outcomes, such as survival. Caregiving tasks associated with significant physical and emotional strain may result in high levels of caregiver burden. Caregiver burden may undermine not only quality of life for the caregiver, but also the quality of care and support provided to patients. We hypothesized that patient symptom burden is an important contributor to caregiver burden. We used validated patient reported outcome measures to investigate the relationship of patient symptomatology to caregiver task burden in locally advanced head and neck cancer (HNC) patients.
Methods: Patient symptom burden was assessed using the Vanderbilt Head and Neck Symptom Survey 2.0 (VHNSS 2.0; comprised of 10 domains and 3 single items), and caregiver task burden was assessed using the Caregiver Task Inventory (CTI ; comprised of 11 domains). Caregiver task burden was quantified as both number of tasks as well as a composite score of task difficulty and distress. Spearman’s rank correlations were run to determine the relationship between HNC symptom burden and caregiver task burden.
Results: 98 HNC patient-caregiver dyads were included. Patients were predominantly male (78%) and Caucasian (97%). The median time since diagnosis was 3.6 months (IQR 2 – 7), and 90% were receiving or had received combined modality treatment. Caregivers were predominantly female (82%) and Caucasian (93%), and 78% were married or partnered to their care recipient. While correlations between increasing symptom burden and number of tasks performed were observed across multiple domains, the more frequent and stronger correlations were seen between symptom burden and the distress/difficulty of caregiving tasks.
For example, in terms of number of tasks, levels of patient-reported mouth pain was positively associated with only the number of oral care tasks being performed by caregivers (rs=.24, p=.017) yet levels of mouth pain were positively correlated with increased difficulty/distress in multiple task domains: medical tasks (rs=.32, p=.002), nutrition tasks (rs=.31, p=.003), oral care tasks (rs=.26, p=.013) and skin care tasks (rs=.22, p=.035). Increased difficulty swallowing liquids positively correlated with caregiver difficulty/distress conducting patient rehabilitation tasks including swallowing exercises (rs=.36, p<.001), nutrition tasks (rs=.32, p=.002), medical tasks (rs=.30, p=.004), and oral care tasks (rs=.25, p=.017).
Conclusion: Overall, correlations between patient symptom domains and task domains were as expected. Patients with increased symptoms required the caregiver to perform an increasing number of tasks. Moreover, increasing symptoms were associated with greater levels of distress and difficulty in tasks performed by the caregiver. Studies of caregivers should investigate the benefit of interventions to support the performance of caregiving tasks for highly symptomatic HNC patients.