ArticleCurrent oncology (Toronto, Ont.)2022
Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.
Article in Current oncology (Toronto, Ont.), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers.
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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.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
31 citing papers in PubMed, 42 citations in OpenAlex.
- Bright IDEAS-YA Skills Training and Psychosocial Outcomes of Young Adults With Cancer: A Randomized Clinical Trial.JAMA network open · 2026Trial
- Symptom burden in young adult brain tumor survivors: Key intervention targets based on patient-reported outcome network analyses.Neuro-oncology practice · 2026Article
- Self-reported peripheral neuropathic symptoms in long-term adolescent and young adult (AYA) cancer survivors: results of the SURVAYA study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Patient-reported outcomes in cancer survivorship: insights from two decades of population-based PROFILES registry research.Journal of cancer survivorship : research and practice · 2026Review
- Findings from a Randomized Pilot of a Full Factorial Trial of ASCENT: Acceptability, Feasibility, and Intervention Adherence.Research square · 2026Article
- Artificial intelligence-generated synthetic data for cancer research and clinical trials.Nature reviews. Cancer · 2026Review
- Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.Journal of cancer survivorship : research and practice · 2026Article
- Article
- Knowledge Representation of a Multicenter Adolescent and Young Adult Cancer Infrastructure: Development of the STRONG AYA Knowledge Graph.JCO clinical cancer informatics · 2026Article
- Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.Journal of cancer survivorship : research and practice · 2025Observational
- 5-Year conditional relative survival of adolescents and young adults with solid malignancies in the Netherlands: a population-based cohort study.The Lancet regional health. Europe · 2025Article
- Associations of adherence to the World Cancer Research Fund lifestyle recommendations with health-related quality of life and fatigue in Adolescent and Young Adult (AYA) cancer survivors: results from the SURVAYA study.Journal of cancer survivorship : research and practice · 2025Review
- Pre-treatment fertility preservation and post-treatment reproduction in long-term survivors of adolescent and young adult (AYA) cancer.Journal of cancer survivorship : research and practice · 2025Article
- Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach.JMIR formative research · 2025Article
- Five-year conditional relative survival up to 10 years post-diagnosis among adolescent and young adult breast cancer patients by age, stage, and receptor subtype.Journal of the National Cancer Center · 2025Article
- Adherence to the World Cancer Research Fund/American Institute for Cancer Research recommendations for cancer prevention in adolescent and young adult (AYA) cancer survivors: results from the SURVAYA study.Journal of cancer survivorship : research and practice · 2025Article
- Long-term health-related quality of life among adolescent and young adult breast cancer survivors.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Adverse health outcomes and health-related quality of life (HRQoL) among long-term adolescent and young adult (AYA) brain tumour survivors: results from the population-based SURVAYA study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Rethinking the rise of early-onset gastrointestinal cancers: a call to action.JNCI cancer spectrum · 2025Article
- Actionability of Synthetic Data in a Heterogeneous and Rare Health Care Demographic: Adolescents and Young Adults With Cancer.JCO clinical cancer informatics · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
16 authors at 11 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundParticipation of Adolescents and Young Adults with cancer (AYAs: 18-39 years at time of diagnosis) in patient-reported outcome studies is warranted given the limited knowledge of (long-term) physical and psychosocial health outcomes. We examined the representativeness of AYAs participating in the study, to observe the impact of various invitation methods on response rates and reasons for non-participation.
methodsA population-based, cross-sectional cohort study was performed among long-term (5-20 years) AYA cancer survivors. All participants were invited using various methods to fill in a questionnaire on their health outcomes, including enclosing a paper version of the questionnaire, and sending a reminder. Those who did not respond received a postcard in which they were asked to provide a reason for non-participation.
resultsIn total, 4.010 AYAs (response 36%) participated. Females, AYAs with a higher socio-economic status (SES), diagnosed more than 10 years ago, diagnosed with a central nervous system tumor, sarcoma, a lymphoid malignancy, stage III, or treated with systemic chemotherapy were more likely to participate. Including a paper questionnaire increased the response rate by 5% and sending a reminder by 13%. AYAs who did not participate were either not interested (47%) or did want to be reminded of their cancer (31%).
conclusionsStudy participation was significantly lower among specific subgroups of AYA cancer survivors. Higher response rates were achieved when a paper questionnaire was included, and reminders were sent. To increase representativeness of future AYA study samples, recruitment strategies could focus on integrating patient-reported outcomes in clinical practice and involving AYA patients to promote participation in research.
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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.