title: Talking About Cancer and Meeting Peer Survivors: Social Information Needs of Adolescents and Young Adults Diagnosed with Cancer.
abstract: Limited research exists on the social information needs of adolescents and young adults (AYAs, aged 15-39 at diagnosis) with cancer.
  
  
  
  The Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) Study recruited 523 patients to complete surveys 6-14 months after cancer diagnosis. Participants reported information needs for talking about their cancer experience with family and friends (TAC) and meeting peer survivors (MPS). Multiple logistic regression was used to examine factors associated with each need.
  
  
  
  Approximately 25% (118/477) and 43% (199/462) of participants reported aTACorMPSneed respectively. Participants in their 20s (vs. teenagers) were more likely to report aMPSneed (p=0.03). Hispanics (vs. non-Hispanic whites) were more likely to report aTACneed (p=0.01). Individuals who did not receive but reported needing support groups were about 4 and 13 times as likely to reportTACandMPSneeds respectively (p<0.05). Participants reporting high symptom burden were more likely to reportTACandMPSneeds (p<0.01), and those reporting fair/poor quality of care were more likely to report aTACneed (p<0.01). Those reporting that cancer had an impact on several key relationships with family and friends were more likely to report social information needs.
  
  
  
  Social information needs are higher in AYAs diagnosed in their 20s, in Hispanics, among those reporting high symptom burden and/or lower quality of care, and in individuals not in support groups. Efforts should be made to develop interventions for AYAs in most need of social information and support.
authors.affiliation: Cancer Prevention Fellowship, National Cancer Institute , National Institutes of Health, Bethesda, Maryland. ; Office of Cancer Survivorship, National Cancer Institute , National Institutes of Health, Bethesda, Maryland. ; Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute , National Institutes of Health, Bethesda, Maryland.
authors.forename: Erin E
authors.initials: EE
authors.lastname: Kent
authors.forename: Ashley Wilder
authors.initials: AW
authors.lastname: Smith
authors.forename: Theresa H M
authors.initials: TH
authors.lastname: Keegan
authors.forename: Charles F
authors.initials: CF
authors.lastname: Lynch
authors.forename: Xiao-Cheng
authors.initials: XC
authors.lastname: Wu
authors.forename: Ann S
authors.initials: AS
authors.lastname: Hamilton
authors.forename: Ikuko
authors.initials: I
authors.lastname: Kato
authors.forename: Stephen M
authors.initials: SM
authors.lastname: Schwartz
authors.forename: Linda C
authors.initials: LC
authors.lastname: Harlan
keywords: communication; information needs; peer support; social support; support group; survivorship