Information Needs of Patients Diagnosed with Head and Neck Cancer Undergoing Radiation Therapy: a Survey of Patient Satisfaction

Abstract

Research suggests that the information needs of patients diagnosed with head and neck cancer can be particularly complex, given the frequent need for multidisciplinary treatments and resulting potential for profound functional impairments. This study was designed to identify head and neck cancer patients’ reported informational needs and to evaluate their satisfaction with the written information they received. The study was divided into 2 phases: phase 1, prior to development of a new educational pamphlet, and phase 2, after its implementation. A survey was designed to evaluate several measures including content, amount, understanding, and timing of information delivery. It was distributed at two points during patients’ treatment pathway for each phase: at their last radiation appointment and at their posttreatment follow-up appointment. Participant responses after the revised pamphlet indicated greater preparedness before their first treatment, as well as increased satisfaction with treatment option information. Most were satisfied with information timing, but about a third did indicate that additional information would have been helpful at variable time points. Open-ended responses demonstrated that overall, patients do still desire more information, particularly on side effect and self-care management information. While patients with head and neck cancer appear to be generally satisfied with the written information received, our findings suggest that there is still considerable variability in how the information is understood, when it should be delivered, and in which areas more would have been beneficial. These findings underscore the need to consider how best to balance available resources in order to provide more tailored yet comprehensive education for this group of patients.