title: Education and support needs in patients with head and neck cancer: A multi-institutional survey.
abstract: 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.
  
  
  
  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.
  
  
  
  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%).
  
  
  
  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. Cancer 2017;123:1949-1957. © 2017 American Cancer Society.
authors.affiliation: Central Clinical School, The University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Joe
authors.initials: J
authors.lastname: Jabbour
authors.affiliation: Department of Radiation Oncology and Medical Services, Chris O'Brien Lifehouse, Camperdown, New South Wales, Australia.|Department of Medicine, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Chris
authors.initials: C
authors.lastname: Milross
authors.affiliation: Department of Medicine, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia.|Department of Radiation Oncology, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, New South Wales, Australia.
authors.forename: Puma
authors.initials: P
authors.lastname: Sundaresan
authors.affiliation: Department of Head and Neck Surgery, Liverpool Hospital, Liverpool, New South Wales, Australia.
authors.forename: Ardalan
authors.initials: A
authors.lastname: Ebrahimi
authors.affiliation: Centre for Medical Psychology and Evidence-Based Decision-making, The University of Sydney, Camperdown, New South Wales, Australia.|Psycho-Oncology Cooperative Research Group (POCOG), School of Psychology, The University of Sydney, Camperdown, New South Wales, Australia.
authors.forename: Heather L
authors.initials: HL
authors.lastname: Shepherd
authors.affiliation: Centre for Medical Psychology and Evidence-Based Decision-making, The University of Sydney, Camperdown, New South Wales, Australia.|Psycho-Oncology Cooperative Research Group (POCOG), School of Psychology, The University of Sydney, Camperdown, New South Wales, Australia.
authors.forename: Haryana M
authors.initials: HM
authors.lastname: Dhillon
authors.affiliation: Department of Head and Neck Surgery, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, New South Wales, Australia.
authors.forename: Gary
authors.initials: G
authors.lastname: Morgan
authors.affiliation: Department of Head and Neck Surgery, Wollongong Hospital, Wollongong, New South Wales, Australia.
authors.forename: Bruce
authors.initials: B
authors.lastname: Ashford
authors.affiliation: Department of Head and Neck Surgery, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, New South Wales, Australia.
authors.forename: Muzib
authors.initials: M
authors.lastname: Abdul-Razak
authors.affiliation: Department of Head and Neck Surgery, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, New South Wales, Australia.
authors.forename: Eva
authors.initials: E
authors.lastname: Wong
authors.affiliation: Department of Medicine, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia.|Department of Radiation Oncology, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, New South Wales, Australia.
authors.forename: Michael
authors.initials: M
authors.lastname: Veness
authors.affiliation: Department of Head and Neck Surgery, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, New South Wales, Australia.
authors.forename: Carsten E
authors.initials: CE
authors.lastname: Palme
authors.affiliation: Sydney Head and Neck Cancer Institute, Chris O'Brien Lifehouse, Camperdown, New South Wales, Australia.
authors.forename: Cate
authors.initials: C
authors.lastname: Froggatt
authors.affiliation: Department of Head and Neck Surgery, Liverpool Hospital, Liverpool, New South Wales, Australia.
authors.forename: Ruben
authors.initials: R
authors.lastname: Cohen
authors.affiliation: Department of Medicine, University of New South Wales, Kensington, New South Wales, Australia.
authors.forename: Rafael
authors.initials: R
authors.lastname: Ekmejian
authors.affiliation: Department of Medicine, University of New England, Armidale, New South Wales, Australia.
authors.forename: Jessica
authors.initials: J
authors.lastname: Tay
authors.affiliation: Department of Medicine, University of New South Wales, Kensington, New South Wales, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Roshan
authors.affiliation: Central Clinical School, The University of Sydney, Sydney, New South Wales, Australia.|Sydney Head and Neck Cancer Institute, Chris O'Brien Lifehouse, Camperdown, New South Wales, Australia.|South West Clinical School, University of New South Wales, New South Wales, Australia.
authors.forename: Jonathan R
authors.initials: JR
authors.lastname: Clark
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000523:psychology; D003430:Cross-Sectional Studies; D018450:Disease Progression; D005260:Female; D006258:Head and Neck Neoplasms / Q000523:psychology* / Q000628:therapy; D040441:Health Educators; D006301:Health Services Needs and Demand; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009517:New South Wales; D010353:Patient Education as Topic; D011379:Prognosis; D060728:Reproductive Health; D012657:Self-Help Groups; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: consumer health information; education; head and neck neoplasms; patients; social support