title: Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study.
abstract: OBJECTIVE
  We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs.
  
  
  METHODS
  We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin's lymphoma, non-Hodgkin's lymphoma, germ cell cancer, or sarcoma in 2007-2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors.
  
  
  RESULTS
  More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms.
  
  
  CONCLUSIONS
  Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors.
  
  
  CONCLUSIONS
  We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.
authors.affiliation: Cancer Prevention Institute of California, CA 94538, USA. theresa.keegan@CPIC.org
authors.forename: Theresa H M
authors.initials: TH
authors.lastname: Keegan
authors.forename: Daphne Y
authors.initials: DY
authors.lastname: Lichtensztajn
authors.forename: Ikuko
authors.initials: I
authors.lastname: Kato
authors.forename: Erin E
authors.initials: EE
authors.lastname: Kent
authors.forename: Xiao-Cheng
authors.initials: XC
authors.lastname: Wu
authors.forename: Michelle M
authors.initials: MM
authors.lastname: West
authors.forename: Ann S
authors.initials: AS
authors.lastname: Hamilton
authors.forename: Brad
authors.initials: B
authors.lastname: Zebrack
authors.forename: Keith M
authors.initials: KM
authors.lastname: Bellizzi
authors.forename: Ashley W
authors.initials: AW
authors.lastname: Smith
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D019538:Health Care Surveys; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006801:Humans; D007255:Information Services; D008297:Male; D020380:Needs Assessment; D009369:Neoplasms / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life; D012042:Registries; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D055815:Young Adult