Caregiver Experience Throughout Head and Neck Cancer Survivorship: Longitudinal Study

Introduction: Caregiver burden (CGB) is a multidimensional concept comprising social, emotional, and financial dimensions. While head and neck cancer (HNC) and its treatment may use functional impairment necessitating extensive regiving, little has been examined regarding HNC-related CGB. Method: Prospective longitudinal survey of treatment-naive adults with HNC (care receivers) and their primary informal caregivers was undertaken from October 2019 to December 2020. Participants were surveyed at 3 time points: diagnosis, mid-treatment, and end of treatment (EOT). Caregivers were surveyed with the Caregiver Reaction Assessment (CRA) tool, divided into 5 subscales on a scale of 1 to 5. Higher CRA scores indicate stronger negative impact, in all subscales except for the self-esteem domain. Results: Of 108 newly diagnosed HNC survivors, 64 (59%) were eligible for the study cohort, 42 of whom were accompanied by a primary informal caregiver who was subsequently enrolled. Caregivers ranged from spouses/partners (91%), daughters (7%), and parents (2%). Among 10 caregivers (24%) who completed all 3 consecutive time points, CRA scores (median [range]) by subscale at diagnosis were: disrupted schedule, 3 (2-3.6);financial problems, 3 (2-3.6);health problems, 3 (2.5-3.5);family support, 2.2 (1-3.6);and self-esteem, 4.1 (3.4-4.4). These values remained consistent throughout the survivorship trajectory. At EOT, health problems (3.6 [2.5-4]), and self-esteem subscales (3.7 [3.1-4.3]) were most negatively affected. A significant decrease in selfesteem scores from diagnosis to EOT (P = .014) indicates worsening self-esteem. Two caregivers cited changes in employment from diagnosis to EOT, with 1 having to quit their job completely. Some 50% reported an effect on employment status and monthly income due to the COVID-19 pandemic. Conclusion: HNC caregivers appear to have consistently elevated CGB regarding disrupted schedules and financial and health problems throughout survivorship. At EOT, caregiver self-esteem appears to suffer significantly while negative health-related impact worsens.