title: Decision-making by adolescents and parents of children with cancer regarding health research participation.
abstract: BACKGROUND
  Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer.
  
  
  METHODS
  This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research.
  
  
  RESULTS
  Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01).
  
  
  CONCLUSIONS
  AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials.
authors.affiliation: IWK Health Centre, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
authors.forename: Kate
authors.initials: K
authors.lastname: Read
authors.forename: Conrad Vincent
authors.initials: CV
authors.lastname: Fernandez
authors.forename: Jun
authors.initials: J
authors.lastname: Gao
authors.forename: Caron
authors.initials: C
authors.lastname: Strahlendorf
authors.forename: Albert
authors.initials: A
authors.lastname: Moghrabi
authors.forename: Rebecca Davis
authors.initials: RD
authors.lastname: Pentz
authors.forename: Raymond Carlton
authors.initials: RC
authors.lastname: Barfield
authors.forename: Justin Nathaniel
authors.initials: JN
authors.lastname: Baker
authors.forename: Darcy
authors.initials: D
authors.lastname: Santor
authors.forename: Charles
authors.initials: C
authors.lastname: Weijer
authors.forename: Eric
authors.initials: E
authors.lastname: Kodish
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D002986:Clinical Trials as Topic; D003657:Decision Making; D006801:Humans; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010290:Parents; D010358:Patient Participation; D011795:Surveys and Questionnaires; D055815:Young Adult