Background: Head and neck cancer (HNC) encompasses a diverse group of tumours and thus providing appropriate and tailored information to patients prior to, during and following treatment is a challenge.
Objectives: Characterise the experience and unmet needs of HNC patients regarding information and support provision.
Methods: A 28 question cross-sectional survey was completed by patients treated for HNC at one of four institutions in NSW, Australia (Chris O’Brien Lifehouse, Liverpool, Westmead, and Wollongong Hospitals). It consisted of the adapted Kessler Psychological Distress Scale (K-10) and questions assessing information quality, quantity and format.
Findings: A total of 597 patients responded, their mean age was 58 (range: 21-94) with 284 males and 313 females. Most patients reported information regarding the disease process (76%), prognosis (67%) and treatment (77%) was sufficient, and 50% received little or no information about coping with stress and anxiety. A substantial proportion of patients reported receiving minimal information on psychosexual health (56%) or availability of patient support groups (56%). Most patients preferred access to multiple modes of information delivery (72%) with the preferred modality being one-on-one meetings with a health educator (37%) followed by internet based written information (19%).
Interpretation: Patients with HNC are a diverse group with complex educational and support needs. Patients appear to be given information regarding survivorship topics such as psychological well-being, patient support groups, and psychosexual health less frequently than disease and treatment. Verbal communication needs to be reinforced by accessible well-constructed written and multimedia resources appropriate to the patient’s education level.