title: Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words.
abstract: OBJECTIVE
  Categorization of the needs of AYA cancer survivors is primarily based on quantitative analyses of epidemiological and observational research. The present study classified the phenomenological experiences of AYA survivors based on their own language.
  
  
  METHODS
  A systematic approach for selecting qualitative studies of unmet needs in AYA cancer survivors was used. Following selection based on quality, survivor statements were entered verbatim and thematic analysis was conducted using NVivo qualitative research software.
  
  
  RESULTS
  A total of 1993 AYA cancer survivors (post-treatment) were included in 58 studies (78% individual interviews). Mean age was 27.6 with an average of 8.6 years post-primary treatment. The organizational framework reported in this study was based on a heterogeneous group of cancer types. Thirteen themes including symptoms, function, reproductive health, emotional well-being, health management, health care system, social interaction, romantic relationships, cancer disclosure, normalcy, career development and employment, and school and fiscal concerns were identified. Forty-eight subthemes were also identified covering such areas as fertility, integrative health services, advice for cancer disclosure, family interaction, and insurance challenges.
  
  
  CONCLUSIONS
  Direct analysis of text identified many common unmet needs similarly reported in the quantitative literature. The phenomenological data also provided a breakdown of unmet needs into subthemes or elements of unmet needs.
  
  
  CONCLUSIONS
  This information can help form the basis for a personalized, valid, and reliable evaluation tool of the range of unmet needs in AYA survivors.
authors.affiliation: Program in Occupational Therapy and Department of Neurology, Washington University School of Medicine, 4444 Forest Park Ave, Campus Box 8505, St. Louis, MO, 63108, USA. wongal@wustl.edu.
authors.forename: Alex W K
authors.initials: AWK
authors.lastname: Wong
authors.affiliation: Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO, USA.
authors.forename: Ting-Ting
authors.initials: TT
authors.lastname: Chang
authors.affiliation: Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO, USA.
authors.forename: Katrina
authors.initials: K
authors.lastname: Christopher
authors.affiliation: Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO, USA.|Department of Rehabilitation Sciences, Hong Kong Polytechnic University, Hong Kong Special Administrative Region, China.
authors.forename: Stephen C L
authors.initials: SCL
authors.lastname: Lau
authors.affiliation: Roswell Park Cancer Institute and Women and Children's Hospital of Buffalo, Buffalo, NY, USA.
authors.forename: Lynda K
authors.initials: LK
authors.lastname: Beaupin
authors.affiliation: Stan Richards School of Advertising and Public Relations, Moody College of Communication, University of Texas, Austin, TX, USA.
authors.forename: Brad
authors.initials: B
authors.lastname: Love
authors.affiliation: Bernard Becker Medical Library, Washington University School of Medicine, St. Louis, MO, USA.
authors.forename: Kim L
authors.initials: KL
authors.lastname: Lipsey
authors.affiliation: Departments of Medical and Clinical Psychology and Preventive Medicine and Biometrics, Uniformed Services University of the Health Sciences, Bethesda, MD, USA.
authors.forename: Michael
authors.initials: M
authors.lastname: Feuerstein
mesh_terms: D000328:Adult; D000073116:Cancer Survivors / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand / Q000592:standards*; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D036301:Qualitative Research
keywords: Adolescent and young adult; Cancer survivorship; Mixed methods research; Needs; Qualitative