title: Distress, concerns and unmet needs in survivors of head and neck cancer: a cross-sectional survey.
abstract: The aim of this study was to identify the distress, unmet needs and concerns of head and neck cancer (HNC) survivors in the first 5 years after treatment. Two hundred and eighty HNC survivors from three Scottish health boards responded to a cross-sectional postal survey in 2011. Questionnaires included the Distress Thermometer, Patient Concerns Inventory (PCI) and an adapted version of the PCI to measure unmet needs. One-third of the survivors had moderate or severe levels of distress, and 74% had at least one unmet need. The most common concerns and unmet needs included oral and eating problems, fear of recurrence and fatigue. Multivariate analysis revealed that being younger, out of work (not retired), ever having had a feeding tube fitted, having a greater number of comorbidities and living alone were associated with higher levels of distress, concerns and unmet needs. The diversity of concerns and unmet needs identified in this study highlights the importance of holistic needs assessment as part of follow-up care for HNC survivors with tailoring of support for particular concerns. Specific information resources and self-management strategies are required to help HNC survivors with the practical and functional consequences of HNC treatment.
authors.affiliation: NMAHP Research Unit, Scion House, University of Stirling, Stirling, UK.
authors.forename: M
authors.initials: M
authors.lastname: Wells
authors.affiliation: NMAHP Research Unit, Scion House, University of Stirling, Stirling, UK.
authors.forename: M
authors.initials: M
authors.lastname: Cunningham
authors.affiliation: School of Nursing and Midwifery, University of Dundee, Dundee, UK.
authors.forename: H
authors.initials: H
authors.lastname: Lang
authors.affiliation: School of Psychology, University of Dundee, Dundee, UK.
authors.forename: S
authors.initials: S
authors.lastname: Swartzman
authors.affiliation: Head and Neck Cancer Service, Queen Margaret Hospital, Dunfermline, UK.
authors.forename: J
authors.initials: J
authors.lastname: Philp
authors.affiliation: Ninewells Hospital, Dundee, UK.
authors.forename: L
authors.initials: L
authors.lastname: Taylor
authors.affiliation: Medicine & Surgery, King Abdulaziz Medical City, Jeddah, Saudi Arabia.|NHS Forth Valley, UK.
authors.forename: J
authors.initials: J
authors.lastname: Thomson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003430:Cross-Sectional Studies; D005260:Female; D006258:Head and Neck Neoplasms / Q000523:psychology*; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D020380:Needs Assessment; D017060:Patient Satisfaction; D011788:Quality of Life; D012307:Risk Factors; D012606:Scotland; D012944:Social Support; D013315:Stress, Psychological / Q000209:etiology*; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*
keywords: Distress Thermometer; Patient Concerns Inventory; concerns; head and neck cancer; survivors; unmet needs