ArticleCancer2020
Early information needs of adolescents and young adults about late effects of cancer treatment.
Article in Cancer, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers.
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.
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Who cites it
25 citing papers in PubMed, 39 citations in OpenAlex.
- Let's TOC Fertility: A stepped wedge cluster randomized controlled trial of the Telehealth Oncofertility Care (TOC) intervention in children, adolescent and young adult cancer survivors.Contemporary clinical trials · 2024Trial
- Primary Care Utilization and Cardiovascular Screening in Adult Survivors of Childhood Cancer.JAMA network open · 2023Trial
- Desire for future children and interest in consultation with a fertility specialist among adolescent and young adult (AYA) cancer patients.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- 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
- Psychosocial Support Needs and Utilization of Support Among Survivors of Cancer in Young Adulthood in Switzerland: A Report From the Adolescent and Young Adult (AYA) Psychosocial Health Study.Psycho-oncology · 2026Article
- Future to Hold: Addressing Fertility Preservation Access in Adolescents and Young Adult Cancer Care.JCO oncology practice · 2026Article
- Fertility Preservation Services for Adolescents and Young Adults: 2022 National Cancer Institute Community Oncology Research Program Landscape Assessment.JCO oncology practice · 2026Article
- Article
- Cancer advocacy, barriers and associated factors among adolescents and young adults with cancer in Africa.Ecancermedicalscience · 2025Article
- Article
- Fertility preservation before and after cancer treatment in children, adolescents, and young adults.Cancer · 2024Review
- Development of thePEC innovation · 2023Article
- Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer.Children (Basel, Switzerland) · 2022Article
- A Support System for Adolescent and Young Adult Patients with Cancer at a Comprehensive Cancer Center.JMA journal · 2022Review
- Conflicting goals and obligations: Tensions affecting communication in pediatric oncology.Patient education and counseling · 2022Article
- Late effects of cancer in children, teenagers and young adults: Population-based study on the burden of 183 conditions, in-patient and critical care admissions and years of life lost.The Lancet regional health. Europe · 2022Article
- Thinking ahead: Parents' worries about late effects of childhood cancer treatment.Pediatric blood & cancer · 2021Article
- Clinicians' Perspectives on the Functions of Communication in Pediatric Oncology.Journal of palliative medicine · 2021Article
- "Don't be afraid to speak up": Communication advice from parents and clinicians of children with cancer.Pediatric blood & cancer · 2021Article
- Assume It Will Break: Parental Perspectives on Negative Communication Experiences in Pediatric Oncology.JCO oncology practice · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundAdolescent and young adult (AYA) cancer survivors have high risks of late effects. Little is known about the late-effect information needs of AYAs early in treatment or their role in treatment decision making. This study evaluated the importance, quality, and implications of information about late effects in AYAs recently diagnosed with cancer.
methodsThis study surveyed 201 AYAs with cancer who were 15 to 29 years old and were treated at the Dana-Farber Cancer Institute (Boston, Massachusetts). Patients were approached within 6 weeks of their diagnosis and were asked about their late-effect and infertility information needs, treatment decision making, and communication outcomes.
resultsForty-five percent of the participants were female; 88% were white. Most AYAs (87% [173 of 200]) considered information about the risks of late effects to be extremely or very important; 80% (159 of 200) valued information about infertility. Many were distressed by information about late effects (53% [105 of 200]) and infertility (45% [89 of 200]); those who considered late-effect information distressing were more likely to value this information (P < .0001). Consideration of late effects (41% [82 of 201]) and infertility (36% [72 of 201]) greatly influenced many patients' treatment decision making. Although 92% of the patients (184 of 199) reported receiving high-quality information about the diagnosis, 57% (113 of 199; P < .0001) and 65% (130 of 199; P < .0001) felt that they had received high-quality information about late effects and infertility, respectively.
conclusionsMost AYAs with cancer value early information about the risks of late effects and infertility, yet many patients felt that they had not received high-quality information about these topics. The development of age-appropriate late-effect communication strategies that recognize high AYA distress may help to address the gap between desired information and perceived information quality.
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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.