Survey of Danish Head and Neck Cancer Patients’ Positions on Personalized Medicine, Gene Tests, and Personalized Follow-Up

Abstract

The field of personalized medicine (PM) has grown rapidly because of the “omics revolution”, but PM may be difficult for patients to comprehend. This study sought to explore head and neck cancer (HNC) patients’ positions and knowledge of PM, gene tests, and follow-up and to compare HNC patients’ positions to a sample from a national Danish questionnaire. To do this, patients with prior HNC were invited to participate in a questionnaire. Initial interviews revealed a heterogenic understanding of PM between patients. A total of 226 patients were included in the survey and 177 patients with complete data were included for analysis. Most patients were more positive than negative towards gene tests and gene research (83% and 93%, respectively), but 72% had little or no knowledge of the subject. Almost all patients, 98%, were satisfied with their follow-up. Significantly more patients with HNC were positive towards gene research compared to a sample from a national Danish questionnaire (p < 0.001). Patients with HNC were positive towards gene tests and PM, but patients may not understand or comprehend the information given, and it is important to inform and educate patients and health professionals to establish common ground in PM.

Keywords

• head and neck neoplasms
• personalized medicine
• otorhinolaryngology
• shared decision making