Informational and support needs of patients with head and neck cancer: current status and emerging issues

Carolyn Y. Fang, Carolyn J. Heckman

The objective of this article is to review and summarize the extant literature on head and neck cancer (HNC) patients' informational needs and to characterize emerging issues in this patient population in order to define priorities for future research. HNC patients may undergo challenging treatment regimens and experience treatment-related alterations in primary daily functions such as speech and eating. These changes often persist following treatment and may lead to significant deficits in quality of life and interpersonal relations. Despite empirical evidence demonstrating that receipt of adequate information and support is predictive of improved outcomes post-treatment, relatively limited attention has been paid to the informational and support needs of HNC patients. This review focuses primarily on three topic domains: (1) managing treatment-related side effects; (2) addressing alcohol and tobacco dependence; and (3) informational needs in the areas of human papillomavirus (HPV) and clinical trials. While there is increasing awareness of the rehabilitation and survivorship needs in this patient population, patients note that the impact of treatment on social activities and interactions is under-discussed and of key concern. In addition, there is a significant gap in addressing communication and informational needs of caregivers and family members who are integral for promoting healthy behaviors and self-care post-treatment. Greater integration of programs that address tobacco or alcohol dependency within a comprehensive treatment and support plan may increase patient motivation to seek help and enhance patient success in maintaining long-term abstinence. Finally, emerging patient-provider communication needs, particularly in the context of decision making about clinical trials or surrounding an HPV-related diagnosis, have been noted among both patients and healthcare providers. Future research on the development of novel programs that offer feasible and acceptable methods for addressing unmet informational and support needs is warranted and may yield benefit for improving patient-reported outcomes.