ArticleJournal of cancer survivorship : research and practice2011
Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study.
Article in Journal of cancer survivorship : research and practice, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 101 papers, 3 of them syntheses that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
101 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Pooled it
- Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review.Journal of cancer survivorship : research and practice · 2016Pooled it
- A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000-2011.Journal of cancer survivorship : research and practice · 2012Pooled it
- Trial
- Development of a comprehensive health-related needs assessment for adult survivors of childhood cancer.Journal of cancer survivorship : research and practice · 2013Trial
- Recruiting young adult cancer survivors for behavioral research.Journal of clinical psychology in medical settings · 2013Trial
- Findings from a Randomized Pilot of a Full Factorial Trial of ASCENT: Acceptability, Feasibility, and Intervention Adherence.Research square · 2026Article
- Experiences of Cancer and Cancer Care Amongst Ethnically Minoritised Young People in the UK.Clinical child psychology and psychiatry · 2026Article
- Digital Attention Bias in Cancer Survivors Intervention for Adolescent and Young Adult Cancer Survivors: Protocol for a Pilot Randomized Controlled Trial.JMIR research protocols · 2026Article
- Feasibility and acceptability of a parallel, two-arm randomized controlled trial to evaluate an online physical activity behavior counseling intervention for young adults diagnosed with cancer: a mixed-methods pilot study.Pilot and feasibility studies · 2025Article
- Incorporation of patient-reported outcomes in pediatric cancer clinical trials: design, implementation, and dissemination.Journal of the National Cancer Institute · 2025Article
- Observational
- Evaluation of specialist cancer services for teenagers and young adults in England: interpreting BRIGHTLIGHT study results through the lens of young people with cancer.Research involvement and engagement · 2025Article
- Clinical effectiveness of best-evidence cancer distress management in a real-world practice setting.Translational behavioral medicine · 2025Article
- Recruitment and retention in young adult health research: Motivations and barriers.Journal of clinical and translational science · 2025Article
- Patient-Reported Discussions on Fertility Preservation Before Early-Onset Cancer Treatment.JAMA network open · 2024Article
- Health-related quality of life and supportive care needs in young adult cancer survivors-a longitudinal population-based study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- Integrated Psychological Services in Pediatric Oncology: Caregiver Perspectives at Diagnosis.Cancers · 2024Article
- The Feasibility and Acceptability of a Data Capture Methodology in Pediatric Cancer Patients Treated with Targeted Agents and Immunotherapies.Current oncology (Toronto, Ont.) · 2024Article
- Financial hardship differences by LGBTQ+ status among assigned female at birth adolescent and young adult cancer survivors: a mixed methods analysis.Cancer causes & control : CCC · 2023Article
41 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
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. DISCUSSION: 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. IMPLICATIONS FOR CANCER SURVIVORS: Achieving a reasonable response rate in this population is possible, but requires extensive resources.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.