Education and support needs in patients with head and neck cancer: a multi-institutional survey

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

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

44 Citations (Scopus)


Background: Head and neck cancer (HNC) encompasses a diverse group of tumors, and thus providing appropriate and tailored information to patients before, during, and after treatment is a challenge. The objective of the current study was to characterize the experience and unmet needs of patients with HNC with regard to information and support provision. 

Methods: A 28-question, cross-sectional survey was completed by patients treated for HNC at 1 of 4 institutions in New South Wales, Australia (Chris O'Brien Lifehouse and Liverpool, Westmead, and Wollongong hospitals). It consisted of the adapted Kessler Psychological Distress Scale and questions assessing information quality, quantity, and format. 

Results: A total of 597 patients responded. The mean age of the patients was 58 years (range, 21-94 years) with 284 men and 313 women (1:1.1). The majority of patients reported information concerning the disease process (76%), prognosis (67%), and treatment (77%) was sufficient, and approximately 50% reporting having received little or no information regarding coping with stress and anxiety. A substantial percentage of patients reported receiving minimal information concerning psychosexual health (56%) or the availability of patient support groups (56%). The majority of 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%). 

Conclusions: 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 information concerning disease and treatment. Verbal communication needs to be reinforced by accessible, well-constructed, written and multimedia resources appropriate to the patient's educational level.

Original languageEnglish
Pages (from-to)1949-1957
Number of pages9
Issue number11
Publication statusPublished - 1 Jun 2017
Externally publishedYes


  • Consumer health information
  • Education
  • Head and neck neoplasms
  • Patients
  • Social support


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