An assessment of patient burdens from head and neck cancer survivorship care

•Most head and neck cancer patients (73%) are satisfied with their visit frequency.•Patients with limited social support desire more clinic visits.•Functional deficits are associated with higher reported financial stress.•Travel stress is a major driver of overall patient stress. To assess head and neck cancer (HNC) patients’ perspectives on the value and burdens of routine cancer follow-up care. Data was obtained from HNC patients (n = 100) at an urban, tertiary head and neck cancer clinic. A novel 15-question survey tool evaluated the logistic, financial, and psychosocial burdens associated with clinic visits. The clinical characteristics and survey responses of demographic groups were analyzed with comparative statistics. Linear regression modeling was utilized to identify predictors of overall stress. A majority of study participants were male (74%), white (83%), and had histories of tobacco (77%) and alcohol (77%) use. Most participants were satisfied with the frequency of their office visits (75%). Patients with laryngeal cancer, advanced stage disease, or who underwent multimodality therapy more often desired increased appointment frequency. These patients also rated the burdens of travel cost and overall stress higher, compared to patients desiring visits less often (41.5% vs 28.4%, p = 0.047 and 46.6% vs 38.3%, p = 0.003, respectively). Travel stress was associated with highest overall stress (beta 0.6, CI: 0.4, 0.7). The HNC survivor population is uniquely disenfranchised in several social and economic ways. While most patients are satisfied with their follow-up care, a significant subset of patients – those with limited social support, high financial stress, functional deficits, and those with transportation burdens – desire more frequent care. Survivorship care plans should incorporate the perspectives of current survivors.