ArticlePediatric blood & cancer2016
Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.
Article in Pediatric blood & cancer, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
21 citing papers in PubMed, 1 synthesis or guideline pooled it, 35 citations in OpenAlex.
- Retention strategies in longitudinal cohort studies: a systematic review and meta-analysis.BMC medical research methodology · 2018Pooled it
- The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden.Contemporary clinical trials · 2016Trial
- Incorporation of patient-reported outcomes in pediatric cancer clinical trials: design, implementation, and dissemination.Journal of the National Cancer Institute · 2025Article
- Strategies for recruitment and retention of adolescent and young adult cancer patients in research studies.Journal of clinical and translational science · 2023Review
- Tablet Versus Quick Response Code: Difference in Research Participation Rates?Journal of technology in behavioral science · 2023Article
- Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.Current oncology (Toronto, Ont.) · 2022Article
- Study retention and attrition in a longitudinal cohort study including patient-reported outcomes, fieldwork and biobank samples: results of the Netherlands quality of life and Biomedical cohort study (NET-QUBIC) among 739 head and neck cancer patients and 262 informal caregivers.BMC medical research methodology · 2022Article
- Article
- Conducting Psychosocial Intervention Research among Adolescents and Young Adults with Cancer: Lessons from the PRISM Randomized Clinical Trial.Children (Basel, Switzerland) · 2019Article
- Pilot Use of Selected Measures from the Patient-Reported Outcomes Measurement Information System Social and Mental Health Domains with Young Adult Cancer Patients During the Transition to Survivorship Care.Journal of adolescent and young adult oncology · 2019Article
- Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy.JMIR research protocols · 2019Article
- What we did not learn from an exploratory analysis of economic hardship in newly diagnosed adolescents and young adults with cancer.Pediatric blood & cancer · 2018Article
- Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2018Article
- "I'm Not a Spiritual Person." How Hope Might Facilitate Conversations About Spirituality Among Teens and Young Adults With Cancer.Journal of pain and symptom management · 2018Article
- Prevalence and correlates of high fear of cancer recurrence in late adolescents and young adults consulting a specialist adolescent and young adult (AYA) cancer service.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2018Article
- Prevalence and impact of severe fatigue in adolescent and young adult cancer patients in comparison with population-based controls.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2017Article
- The Benefits and Burdens of Cancer: A Prospective Longitudinal Cohort Study of Adolescents and Young Adults.Journal of palliative medicine · 2017Article
- Intimacy, Substance Use, and Communication Needs During Cancer Therapy: A Report From the "Resilience in Adolescents and Young Adults" Study.The Journal of adolescent health : official publication of the Society for Adolescent Medicine · 2017Article
- The Power of Personal Narrative: A Reply to "The Reality of Relapse: Impact of Cancer Relapse on Survivorship Interventions and Patient-Reported Outcomes Data".Pediatric blood & cancer · 2016Article
- Hope, distress, and later quality of life among adolescent and young adults with cancer.Journal of psychosocial oncologyArticle
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Authors and funding
7 authors at 6 institutions in 1 country.
Funding
Abstract
Conducting patient-reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty-seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3-6 and 12-18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper-pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3-6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient-preferred instruments may optimize future research success.
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Registered trials
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.