Intervention For AYAS With Cancer Risk Syndromes

Description

This research is being done because there is a need to improve cancer risk communication and decision-making among adolescents and young adults. In this study, the investigators are looking at whether using a chatbot and online portal for cancer risk information helps improve communication and decision-making. * Over 70,000 adolescents and young adults (AYAs) are diagnosed with cancer in the U.S. every year and up to 10% have genetic changes (or, mutations) that put them at a higher risk of developing new cancers during their lifetimes. These genetic mutations can result in cancer risk syndromes (such as, Lynch Syndrome or Li-Fraumeni Syndrome). Identifying cancer risk syndromes can allow for screening and early diagnosis of future cancers, which could ultimately save lives and offer more care choices for patients. As a result, genetic counseling and testing for cancer risk syndromes is being recommended more for Adolescents and Young Adults with new cancer diagnoses, regardless of family history. * This research study to develop an intervention called AYA-RISE that aims to assist AYAs with cancer risk communication and decision-making around their caregivers.

Conditions

Cancer Risk Syndrome

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Study Overview

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Study Details

Study overview

This research is being done because there is a need to improve cancer risk communication and decision-making among adolescents and young adults. In this study, the investigators are looking at whether using a chatbot and online portal for cancer risk information helps improve communication and decision-making. * Over 70,000 adolescents and young adults (AYAs) are diagnosed with cancer in the U.S. every year and up to 10% have genetic changes (or, mutations) that put them at a higher risk of developing new cancers during their lifetimes. These genetic mutations can result in cancer risk syndromes (such as, Lynch Syndrome or Li-Fraumeni Syndrome). Identifying cancer risk syndromes can allow for screening and early diagnosis of future cancers, which could ultimately save lives and offer more care choices for patients. As a result, genetic counseling and testing for cancer risk syndromes is being recommended more for Adolescents and Young Adults with new cancer diagnoses, regardless of family history. * This research study to develop an intervention called AYA-RISE that aims to assist AYAs with cancer risk communication and decision-making around their caregivers.

AYA-RISE: Refining a Scalable, Patient- and Family-centered Intervention to Improve Cancer Risk Communication and Decision-making Among Adolescents and Young Adults With Cancer Risk Syndromes

Intervention For AYAS With Cancer Risk Syndromes

Condition
Cancer Risk Syndrome
Intervention / Treatment

-

Contacts and Locations

Atlanta

Emory University School of Medicine, Atlanta, Georgia, United States, 30342

Chicago

University of Chicago, Chicago, Illinois, United States, 60637

Boston

Boston Children's Hospital, Boston, Massachusetts, United States, 02115

Boston

Dana Farber Cancer Institute, Boston, Massachusetts, United States, 02115

Salt Lake City

University of Utah, Huntsman Cancer Institute, Salt Lake City, Utah, United States, 84112

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Across all study aims, we will enroll AYA patients, family members/caregivers, and providers.
  • 1. Ages 12-24 years, inclusive
  • 2. Diagnosed with a cancer risk syndrome
  • 3. English-speaking and -reading
  • 4. Receiving care at any of the study sites OR participating in the LiFraumeni Syndrome Association (LFSA) Youth Conference
  • 5. Adequate cognitive function per NeuroQOL indicated by a score of 30 or greater
  • 6. Not receiving active cancer therapy
  • 1. Parent/guardian, spouse/partner, or other family member who participates in the care of AYAs aged 12-24 with cancer risk syndromes
  • 2. English-speaking and -reading
  • 3. At any of the study sites
  • 1. English-speaking and reading
  • 2. Caring for AYAs aged 12-24 with cancer risk syndromes at any of the study sites
  • 1. Ages 12-24 years, inclusive
  • 2. Diagnosed with a cancer risk syndrome
  • 3. English-speaking and -reading
  • 4. Receiving care at Dana-Farber Cancer Institute
  • 5. Adequate cognitive function per NeuroQOL, indicated by a score of 30 or greater
  • 6. Not receiving active cancer therapy
  • 7. Did not participate in a stakeholder interview
  • * Family caregivers of participating 12-17y patients will be eligible to participate in the pilot
  • * 12-17y patients can participate without a family member if both the patient and family member agree.
  • * Patients 18-24y will have the option to participate with or without a family member.
  • 1. Ages 12-24 years, inclusive
  • 2. Diagnosed with a cancer risk syndrome
  • 3. English-speaking and reading
  • 4. Has a planned post-disclosure genetic counseling or follow-up visit at any of the study sites
  • 5. Adequate cognitive function per NeuroQOL, indicated by a score of 30 or greater
  • 6. Not receiving active cancer therapy
  • 7. Did not participate in either part of Aim 1 (interview or pilot)
  • 1. Parent/guardian, spouse/partner, or other family member who participates in the care of AYAs aged 12-24 with cancer risk syndromes
  • 2. English-speaking and -reading
  • 3. At any of the study sites
  • 4. Did not participate in either part of Aim 1 (interview or pilot)
  • 1. Participated in the intervention arm of Aim 2, or
  • 2. Is a site principal investigator at one of the 4 participating study sites

Ages Eligible for Study

12 Years to 24 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Dana-Farber Cancer Institute,

Jennifer Mack, MD, PRINCIPAL_INVESTIGATOR, Dana-Farber Cancer Institute

Study Record Dates

2026-12-31