Evidence map›Paper›PMID 41575674›Full record

ArticleFamilial cancer2026

Development and pilot testing of AYA-RISE, a risk information and screening education intervention for adolescents and young adults with cancer risk syndromes.

Junne Kamihara, Lauren Fisher, Jaclyn Schienda, Rebecca Vanderwall, Moran Snir, Guy Snir, Emilie Simmons, Andrew Khalaj, Evan Goler, Kayla V Hamilton and 13 more

Abstract read
In one paragraph

Article in Familial cancer, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Trial
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

23 authors.

Junne KamiharaDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, USA. junne_kamihara@dfci.harvard.edu.
Lauren FisherDivision of Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA.
Jaclyn SchiendaDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.
Rebecca VanderwallDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.
Moran SnirNest Genomics, Wilmington, DE, USA.
Guy SnirNest Genomics, Wilmington, DE, USA.
Emilie SimmonsNest Genomics, Wilmington, DE, USA.
Andrew KhalajDivision of Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA.
Evan GolerDivision of Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA.
Kayla V HamiltonDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.
Christopher C PorterAflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta and Department of Pediatrics, Emory University School of Medicine, Atlanta, GA, USA.
Bojana PenchevaAflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta and Department of Pediatrics, Emory University School of Medicine, Atlanta, GA, USA.
Joshua D SchiffmanHuntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA.
Luke D MaeseHuntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA.
Wendy KohlmannHuntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA.
Tara O HendersonUniversity of Chicago, Chicago, IL, USA.
Judy E GarberDivision of Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA.
Lisa R DillerDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.
Ami V DesaiUniversity of Chicago, Chicago, IL, USA.
Sarah SavageLabcorp (formerly Invitae Corporation), San Francisco, CA, USA.
James L KloskyAflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta and Department of Pediatrics, Emory University School of Medicine, Atlanta, GA, USA.
Huma Q RanaDivision of Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA.
Jennifer W MackDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.

Funding

The AYA-RISE Intervention: Risk Information and Screening Education for Adolescents and Young Adults with Cancer Predisposition SyndromesU01CA243688 · NCI · DANA-FARBER CANCER INST · PI MACK, JENNIFER W · 2019 to 2019
$3.5M
NCI NIH HHS U01 CA243688NIH HHS 1UO1CA243688-01
6 · The paper itself

Abstract

Genetic testing is increasingly recommended for adolescents and young adults (AYAs) with cancer; however, no AYA-specific models for cancer risk communication have been developed. We developed a chatbot-based patient- and family-centered cancer risk communication tool, the AYA-RISE (AYA-Risk Information and Screening Education) intervention for AYAs aged 12–24 years.The intervention was developed together with AYAs with cancer risk syndromes, their family members, and clinicians, using Invitae’s Gia® chatbot (study Phase 1). 17 AYAs participated in a group discussion and completed surveys for input regarding development. Content was developed for 9 different syndromes. AYA-RISE was then refined after iterative input (Phase 2) and evaluated for feasibility and preliminary outcomes in a pilot study (Phase 3).100% of AYAs used the intervention through a point at which risk information was presented via the chatbot and portal demonstrating enrollment and chatbot use feasibility. Our threshold for acceptability was exceeded, with a post-test Acceptability of Intervention Measure (AIM) score of > 4 by 80% of AYAs. In the pre-visit survey, 40% of AYAs correctly reported risk of cancer by age 30, and 20% correctly reported lifetime cancer risk. Following the visit and use of the chat, 60% correctly reported risk of cancer by age 30 and 90% correctly reported lifetime risk. No significant differences in participant pre (3.4) and post (3.6, p=.34) distress thermometer mean scores were observed.The AYA-RISE intervention was feasible and acceptable for use by AYAs. Preliminary outcomes included improved knowledge when used in conjunction with a cancer risk clinic visit, without increasing distress. A randomized trial is currently ongoing.

Indexed as

Early Detection of CancerNeoplasmsPatient Education as TopicAdolescentAdultChildFemaleGenetic Predisposition to DiseaseGenetic TestingHumansMalePilot ProjectsRisk AssessmentSurveys and QuestionnairesYoung Adult

Identifiers

PMID41575674
PMCPMC12830487

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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.