Survivorship care experiences, information, and support needs of patients with oral and oropharyngeal cancer

Abstract

Background There is little research documenting the posttreatment experiences and needs of oral/oropharyngeal cancer survivors. Methods In this cross-sectional study, 92 patients with oral/oropharyngeal cancer diagnosed between 2 and 5 years prior completed a survey about oral cancer information and support needs. Results About half retrospectively reported that they did not receive a written treatment summary. The desire for more oral cancer information was common; one-third or more desired more information about long-term effects, recommended follow-up, and symptoms that should prompt contacting a doctor. Support needs were less common; only a lack of energy was rated as a significant support need. Patients who had a recurrence, did not drink alcohol, and had a greater recurrence fear desired more information. Smokers and more distressed patients reported more support needs. Conclusion Survivors reported the desire for more oral cancer information. A desire for assistance was less common.