Poster & Mini Oral Joint 2016 COSA and ANZBCTG Annual Scientific Meeting

Head and Neck Cancer Patient Education and Support Needs - A multi-institution patient survey (#192)

Joe Jabbour 1 , Haryana M Dhillon 2 3 , Heather L Shepherd 4 , Chris Milross 5 , Puma Sundaresan 6 7 , Ardalan Ebrahimi 8 , Gary Morgan 9 , Bruce Ashford 10 , Michael Veness 6 7 , Muzib Abdul-Razak 11 , Eva Wong 11 , Carsten Palme 11 , Cate Froggatt 5 , Reuben Cohen 8 , Rafael Ekmejian 12 , Jessica Tay 13 , David Roshan 12 , Jonathan Clark 5 14
  1. Central Clinical School, Sydney Medical School, University of Sydney, Sydney, NSW, Australia
  2. University of Sydney, Sydney, NSW, Australia
  3. Centre for Medical Psychology & Evidence-based Decision-making, University of Sydney, Sydney, NSW, Australia
  4. Psycho-Oncology Cooperative Research Group, University of Sydney, NSW, Australia
  5. Chris O'Brien Lifehouse, Sydney, NSW, Australia
  6. Dept Radiation Oncology, Crown Princess Mary Cancer Care Centre, Westmead, NSW, Australia
  7. Sydney Medical School, University of Sydney, Sydney, NSW, Australia
  8. Department of Head and Neck Surgery, Liverpool Hospital, Liverpool, NSW, Australia
  9. Department of Head and Neck Surgery, Wollongong Hospital, Wollongong, NSW, Australia
  10. Faculty of Medicine, University of New South Wales, Randwick, NSW, Australia
  11. Department of Head and Neck Surgery, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, NSW, Australia
  12. Faculty of Medicine, University of Newcastle, Newcastle, NSW, Australia
  13. Department of Medicine, University of New England, Armidale, NSW, Australia
  14. South West Clinical School, University of New South Wales, Liverpool, NSW, Australia

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.