title: Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study.
abstract: BACKGROUND
  Cancer is rare in adolescents and young adults (AYA), but these patients have seen little improvement in survival in contrast to most other age groups. Furthermore, participation in research by AYAs is typically low. We conducted a study to examine the feasibility of recruiting a population-based sample of AYA survivors to examine issues of treatment and health outcomes.
  
  
  METHODS
  Individuals diagnosed in 2007-08 and age 15-39 at the time of diagnosis with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma were identified by 7 Surveillance, Epidemiology, and End-Results (SEER) cancer registries, mailed surveys within 14 months after diagnosis and again a year later, and had medical records reviewed.
  
  
  RESULTS
  525 (43%) of the eligible patients responded, 39% refused and 17% were lost to follow-up. Extensive efforts were required for most potential respondents (87%). 76% of respondents completed the paper rather than online survey version. In a multivariate model, age, cancer site, education and months from diagnosis to the first mailing of the survey were not associated with participation, although males (p  <  0.01), Hispanics and non-Hispanic blacks (p  <  0.001) were less likely to participate. 91% of survivors completing the initial survey completed the subsequent survey.
  
  
  CONCLUSIONS
  Despite the response rate, those who participated adequately reflected the population of AYA cancer survivors. The study demonstrates that cancer registries are valuable foundations for conducting observational, longitudinal population-based research on AYA cancer survivors.
  
  
  CONCLUSIONS
  Achieving a reasonable response rate in this population is possible, but requires extensive resources.
authors.affiliation: National Cancer Institute, 6130 Executive Blvd, MSC 7344, Bethesda, MD 20892-7344, USA. lh50w@nih.gov
authors.forename: Linda C
authors.initials: LC
authors.lastname: Harlan
authors.forename: Charles F
authors.initials: CF
authors.lastname: Lynch
authors.forename: Theresa H M
authors.initials: TH
authors.lastname: Keegan
authors.forename: Ann S
authors.initials: AS
authors.lastname: Hamilton
authors.forename: Xiao-Cheng
authors.initials: XC
authors.lastname: Wu
authors.forename: Ikuko
authors.initials: I
authors.lastname: Kato
authors.forename: Michele M
authors.initials: MM
authors.lastname: West
authors.forename: Rosemary D
authors.initials: RD
authors.lastname: Cress
authors.forename: Stephen M
authors.initials: SM
authors.lastname: Schwartz
authors.forename: Ashley W
authors.initials: AW
authors.lastname: Smith
authors.forename: Dennis
authors.initials: D
authors.lastname: Deapen
authors.forename: Sonja M
authors.initials: SM
authors.lastname: Stringer
authors.forename: Arnold L
authors.initials: AL
authors.lastname: Potosky
mesh_terms: D000293:Adolescent; D000328:Adult; D000465:Algorithms; D003266:Continuity of Patient Care; D003625:Data Collection / Q000706:statistics & numerical data; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality* / Q000534:rehabilitation; D010358:Patient Participation; D018579:Patient Selection; D011584:Psychology; D011788:Quality of Life; D018426:SEER Program; D017741:Survivors / Q000523:psychology / Q000706:statistics & numerical data; D055815:Young Adult