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
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.
• Across all study aims, we will enroll AYA patients, family members/caregivers, and providers.
‣ AIM 1, PART 1 - STAKEHOLDER INTERVIEWS
‣ AYA Patients
⁃ Ages 12-24 years, inclusive
⁃ Diagnosed with a cancer risk syndrome
⁃ English-speaking and -reading
⁃ Receiving care at any of the study sites OR participating in the LiFraumeni Syndrome Association (LFSA) Youth Conference
⁃ Adequate cognitive function per NeuroQOL indicated by a score of 30 or greater
⁃ Not receiving active cancer therapy
‣ Family caregivers-Inclusion Criteria
⁃ Parent/guardian, spouse/partner, or other family member who participates in the care of AYAs aged 12-24 with cancer risk syndromes
⁃ English-speaking and -reading
⁃ At any of the study sites
‣ Providers Inclusion Criteria (Oncologists, nurses, genetic counselors, social workers, or psychologists)
⁃ English-speaking and reading
⁃ Caring for AYAs aged 12-24 with cancer risk syndromes at any of the study sites
‣ AIM 1, PART 2 - INTERVENTION PILOT
‣ AYA Patients
⁃ Ages 12-24 years, inclusive
⁃ Diagnosed with a cancer risk syndrome
⁃ English-speaking and -reading
⁃ Receiving care at Dana-Farber Cancer Institute
⁃ Adequate cognitive function per NeuroQOL, indicated by a score of 30 or greater
⁃ Not receiving active cancer therapy
⁃ Did not participate in a stakeholder interview
‣ Eligibility notes:
• 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.
‣ AIM 2 - RANDOMIZED TRIAL
‣ AYA Patients
⁃ Ages 12-24 years, inclusive
⁃ Diagnosed with a cancer risk syndrome
⁃ English-speaking and reading
⁃ Has a planned post-disclosure genetic counseling or follow-up visit at any of the study sites
⁃ Adequate cognitive function per NeuroQOL, indicated by a score of 30 or greater
⁃ Not receiving active cancer therapy
⁃ Did not participate in either part of Aim 1 (interview or pilot)
‣ Family caregivers
⁃ Parent/guardian, spouse/partner, or other family member who participates in the care of AYAs aged 12-24 with cancer risk syndromes
⁃ English-speaking and -reading
⁃ At any of the study sites
⁃ Did not participate in either part of Aim 1 (interview or pilot)
‣ AIM 3 - SEMI-STRUCTURED INTERVIEWS AYA Patients, Family Caregivers, Providers, and Site PIs
⁃ Participated in the intervention arm of Aim 2, or
⁃ Is a site principal investigator at one of the 4 participating study sites