title: Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP).
abstract: BACKGROUND
  Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group.
  
  
  METHODS
  Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability.
  
  
  RESULTS
  The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60.
  
  
  CONCLUSIONS
  The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken.
authors.affiliation: Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle and the Hunter Medical Research Institute, Callaghan, New South Wales, Australia. tara.clinton-mcharg@newcastle.edu.au
authors.forename: Tara
authors.initials: T
authors.lastname: Clinton-McHarg
authors.forename: Mariko
authors.initials: M
authors.lastname: Carey
authors.forename: Rob
authors.initials: R
authors.lastname: Sanson-Fisher
authors.forename: Catherine
authors.initials: C
authors.lastname: D'Este
authors.forename: Anthony
authors.initials: A
authors.lastname: Shakeshaft
mesh_terms: D000293:Adolescent; D017677:Age Distribution; D002173:Cancer Care Facilities; D016009:Chi-Square Distribution; D016001:Confidence Intervals; D003430:Cross-Sectional Studies; D005260:Female; D017144:Focus Groups; D019538:Health Care Surveys; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000175:diagnosis / Q000453:epidemiology* / Q000523:psychology* / Q000628:therapy; D009517:New South Wales; D011594:Psychometrics; D011788:Quality of Life; D018570:Risk Assessment; D017678:Sex Distribution; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D016019:Survival Analysis; D055815:Young Adult