Head and neck cancer patient education and support needs - a multiinstitution patient survey

Joe Jabbour, Haryana M. Dhillon, Heather L. Shepherd, Chris Milross, Puma Sundaresan, Ardalan Ebrahimi, Gary Morgan, Bruce Ashford, Michael Veness, Muzib Abdul-Razak, Eva Wong, Carsten Palme, Cate Froggatt, Reuben Cohen, Rafael Ekmejian, Jessica Tay, David Roshan, Jonathan Clark

Research output: Contribution to journalMeeting abstract


Background: Head and neck cancer (HNC) encompasses a diverse group of tumors and thus providing appropriate and tailored information to patients prior to, during and following treatment is a challenge.

Objectives: Characterize 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.
Original languageEnglish
Article number192
Pages (from-to)109
Number of pages1
JournalAsia-Pacific Journal of Clinical Oncology
Issue numberS5
Publication statusPublished - Nov 2016
Externally publishedYes
EventCOSA's 43rd and ANZBCTG's 38th Annual Scientific Meetings. Partners for Progress in Breast Cancer Research and Care (2016) - Gold Coast , Australia
Duration: 15 Nov 201617 Nov 2016

Cite this

Jabbour, J., Dhillon, H. M., Shepherd, H. L., Milross, C., Sundaresan, P., Ebrahimi, A., ... Clark, J. (2016). Head and neck cancer patient education and support needs - a multiinstitution patient survey. Asia-Pacific Journal of Clinical Oncology, 12(S5), 109. [192].