Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study

Linda C Harlan; Charles F Lynch; Theresa H M Keegan; Ann S Hamilton; Xiao-Cheng Wu; Ikuko Kato; Michele M West; Rosemary D Cress; Stephen M Schwartz; Ashley W Smith; Dennis Deapen; Sonja M Stringer; Arnold L Potosky; AYA HOPE Study Collaborative Group

doi:10.1007/s11764-011-0173-y

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Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study

Journal article

Open access

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Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study

Linda C Harlan, Charles F Lynch, Theresa H M Keegan, Ann S Hamilton, Xiao-Cheng Wu, Ikuko Kato, Michele M West, Rosemary D Cress, Stephen M Schwartz, Ashley W Smith, …

Journal of cancer survivorship, Vol.5(3), pp.305-314

09/2011

DOI: 10.1007/s11764-011-0173-y

PMCID: PMC3159756

PMID: 21274648

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Abstract

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. 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. 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. 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. Achieving a reasonable response rate in this population is possible, but requires extensive resources.

Data Collection - statistics & numerical data

SEER Program

Follow-Up Studies

Neoplasms - rehabilitation

Humans

Patient Participation

Psychology

Survivors - statistics & numerical data

Continuity of Patient Care

Neoplasms - mortality

Male

Patient Selection

Young Adult

Algorithms

Adolescent

Quality of Life

Adult

Female

Survivors - psychology

Details

Title: Subtitle: Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study
Creators: Linda C Harlan - National Cancer Institute, 6130 Executive Blvd, MSC 7344, Bethesda, MD 20892-7344, USA. lh50w@nih.gov
Charles F Lynch
Theresa H M Keegan
Ann S Hamilton
Xiao-Cheng Wu
Ikuko Kato
Michele M West
Rosemary D Cress
Stephen M Schwartz
Ashley W Smith
Dennis Deapen
Sonja M Stringer
Arnold L Potosky
AYA HOPE Study Collaborative Group
Resource Type: Journal article
Publication Details: Journal of cancer survivorship, Vol.5(3), pp.305-314
DOI: 10.1007/s11764-011-0173-y
PMID: 21274648
PMCID: PMC3159756
NLM abbreviation: J Cancer Surviv
ISSN: 1932-2267
eISSN: 1932-2267
Publisher: United States
Language: English
Date published: 09/2011
Academic Unit: Epidemiology
Record Identifier: 9983996082502771

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