A Survey of Information Needs and Preferences of Patients With Head and Neck Cancer

To determine the information needs and preferences of patients who had human papillomavirus-associated head and neck cancer (HNC) and who were aged 18-65 years in the post-treatment phase of recovery.

205 patients who completed treatment for HNC at two large cancer centers in Western Canada.

A self-administered survey was completed in paper or online format. Participants were asked about information considered most important, sources of information used during recovery, and sources considered most helpful.

Participants wanted information on signs and symptoms of recurrence, cure rates, post-treatment rehabilitation, treatment and recovery time frames, and financial assistance. They identified healthcare providers as the most frequently used and helpful source of information, but also reported that the Internet was useful and that an online information resource would be helpful during recovery.

Nurses can provide more personalized information for survivors of HNC by contributing to the development of reliable Internet-based resources. The developers of these resources could also consider creating ways to directly link healthcare providers and survivors of HNC who are experiencing problems stemming from diagnosis and treatment.