title: Being Young and Getting Cancer: Development of a Questionnaire Reflecting the Needs and Experiences of Adolescents and Young Adults with Cancer.
abstract: OBJECTIVE
  Cancer is the leading cause of nonaccidental deaths among adolescents and young adults (AYAs). In Denmark, there are substantial gaps in knowledge concerning how AYAs with cancer perceive their diagnostic and therapeutic trajectory and report health-related outcomes. The aim of this study is to describe the development of a questionnaire targeting AYAs with cancer aiming to evaluate treatment and survivorship from the perspective of the patients.
  
  
  METHODS
  Identification of themes and development of items included in the questionnaire were based on a synthesis of literature and qualitative interviews with AYAs in an iterative process involving both a professional advisory panel and a youth panel. During the development process, items were validated through cognitive interviews.
  
  
  RESULTS
  The final questionnaire contained 151 closed- and open-ended items divided into 6 sections regarding: (1) "Time before treatment," (2) "Being told about your illness," (3) "Being a young patient," (4) "Your treatment," (5) "Receiving help living with and after Cancer," and (6) "How are you feeling today?." One hundred one items were specifically developed for this study, while 50 were standardized validated indexes. The questionnaire combined different types of items such as needs, preferences, experiences, and patient-reported outcomes.
  
  
  CONCLUSIONS
  This is one of few developed questionnaires aiming to evaluate the perspective of AYAs with cancer through their whole cancer trajectory. Results from the questionnaire survey are intended for quality improvements and research in AYA cancer care. The study highlights the importance of an extensive patient involvement in all steps of a questionnaire development process.
authors.affiliation: 1 Documentation & Quality, The Danish Cancer Society , Copenhagen, Denmark .
authors.forename: Cecilie Dyg
authors.initials: CD
authors.lastname: Sperling
authors.affiliation: 1 Documentation & Quality, The Danish Cancer Society , Copenhagen, Denmark .
authors.forename: Gitte Stentebjerg
authors.initials: GS
authors.lastname: Petersen
authors.affiliation: 2 University Hospital Zealand and The Research Unit for General Practice and Section of General Practice, Department of Public Health, University of Copenhagen , Copenhagen, Denmark .
authors.forename: Bibi
authors.initials: B
authors.lastname: Hølge-Hazelton
authors.affiliation: 3 Department of Clinical Medicine, Center for Sexology Research, Aalborg University , Aalborg, Denmark .
authors.forename: Christian
authors.initials: C
authors.lastname: Graugaard
authors.affiliation: 4 Danish Cancer Society Research Center , The Danish Cancer Society, Copenhagen, Denmark .
authors.forename: Jeanette Falck
authors.initials: JF
authors.lastname: Winther
authors.affiliation: 4 Danish Cancer Society Research Center , The Danish Cancer Society, Copenhagen, Denmark .
authors.forename: Thorgerdur
authors.initials: T
authors.lastname: Gudmundsdottir
authors.affiliation: 5 The Research Unit for General Practice, Aarhus University , Aarhus, Denmark .
authors.forename: Jette
authors.initials: J
authors.lastname: Ahrensberg
authors.affiliation: 6 Pediatrics and Adolescent Medicine, University Hospital Rigshospitalet , Copenhagen, Denmark .
authors.forename: Kjeld
authors.initials: K
authors.lastname: Schmiegelow
authors.affiliation: 7 Center of Adolescent Medicine, University Hospital Rigshospitalet , Copenhagen, Denmark .
authors.forename: Kirsten A
authors.initials: KA
authors.lastname: Boisen
authors.affiliation: 8 Department of Oncology, Aarhus University Hospital , Aarhus, Denmark .
authors.forename: Pia Riis
authors.initials: PR
authors.lastname: Olsen
authors.affiliation: 1 Documentation & Quality, The Danish Cancer Society , Copenhagen, Denmark .
authors.forename: Anne Christine I Stender
authors.initials: AC
authors.lastname: Heerdegen
authors.affiliation: 1 Documentation & Quality, The Danish Cancer Society , Copenhagen, Denmark .
authors.forename: Emilie Sofia
authors.initials: ES
authors.lastname: Sonnenschein
authors.affiliation: 1 Documentation & Quality, The Danish Cancer Society , Copenhagen, Denmark .
authors.forename: Janne Lehmann
authors.initials: JL
authors.lastname: Knudsen
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D008297:Male; D020380:Needs Assessment; D009369:Neoplasms / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: cancer care continuum; cognitive validation; health related quality of life; qualitative research; questionnaire development