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Journal of Cancer Survivorship

, Volume 5, Issue 3, pp 305–314

First Online: 28 January 2011Received: 23 December 2010Accepted: 09 January 2011

Abstract

IntroductionCancer 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.

MethodsIndividuals 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.

Results525 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.

DiscussionDespite 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.

Implications for Cancer SurvivorsAchieving a reasonable response rate in this population is possible, but requires extensive resources.

KeywordsAdolescent cancer Young adult cancer Survey Response rates Medical records Consent forms The authors have no commercial associations, current and over the past 5 years, that might pose a conflict of interest.

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