ArticleJournal of clinical oncology : official journal of the American Society of Clinical Oncology2009
Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer.
Article in Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 47 papers, 4 of them syntheses that pooled it.
What it found
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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
47 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Current global practice and implications for future research on disseminating health research results to study participants: A systematic review.PLoS medicine · 2025Pooled it
- REPRESENT recommendations: improving inclusion and trust in cancer early detection research.British journal of cancer · 2023Pooled it
- Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents: A Systematic Review.Worldviews on evidence-based nursing · 2017Pooled it
- Recommendations for the return of research results to study participants and guardians: a report from the Children's Oncology Group.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2012Guideline
- Testing approaches to sharing trial results with participants: The Show RESPECT cluster randomised, factorial, mixed methods trial.PLoS medicine · 2021Trial
- Emotion regulation and positive affect in the context of salivary alpha-amylase response to pain in children with cancer.Pediatric blood & cancer · 2018Trial
- Participants' preference for type of leaflet used to feed back the results of a randomised trial: a survey.Trials · 2010Trial
- Participants' uptake of clinical trial results: a randomised experiment.British journal of cancer · 2010Trial
- Adolescents' Experiences With Sequencing for Genetic Predisposition in Pediatric Cancer: A Quantitative Study.Psycho-oncology · 2026Article
- PROTOCOL: Comparative Effectiveness of Tools for Communicating Health Research Results to Study Participants and Others With Relevant Lived Experience: A Living Systematic Review of Randomized Controlled Trials.Campbell systematic reviews · 2026Review
- Article
- Research participants' perspectives regarding the feedback of secondary findings-A cohort from the DDD-Africa study, South Africa.Journal of genetic counseling · 2024Article
- Views of Adolescents and Young Adults with Cancer and Their Oncologists Toward Patients' Participation in Genomic Research.Journal of adolescent and young adult oncology · 2023Article
- Youth and family involvement in the development of a plain language trial results communication tool: CommuniKIDS.Research involvement and engagement · 2023Article
- Developing video education materials for the return of genomic test results to parents and adolescents.PEC innovation · 2022Article
- Developing lay summaries and thank you notes in paediatric pragmatic clinical trials.Health expectations : an international journal of public participation in health care and health policy · 2022Review
- Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.BMC medical ethics · 2022Article
- The relative importance of information items and preferred mode of delivery when disseminating results from trials to participants: A mixed-methods study.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.Journal of empirical research on human research ethics : JERHRE · 2021Article
- An online survey to assess parents' preferences for learning about child health research.Nursing open · 2021Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
purposeThere is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants.
methodsA multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against providing results; and barriers to providing results.
resultsFour hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences.
conclusionParents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated.
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What OpenQuestion holds
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.