Cancer Risk Syndrome Clinical Trial
Official title:
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.
This research study involves three aims (Aims 1, 2, and 3). - Aim 1, Part 1, which focuses on finding the best format for the study intervention (called AYA-RISE); whether AYA-RISE is easy to use; and whether patients, family caregivers, and providers find AYA-RISE acceptable.The research study procedures include: - Using and reviewing AYA-RISE, - Participating in audio-recorded, 30-minute interviews - Aim 1, Part 2, which is a pilot study of the study intervention (called AYA-RISE). In this pilot study, the investigators are looking at whether AYA-RISE is easy to use and what participants think of it. -- The activities involved in this part of the study are: - Baseline Questionnaire - Using and reviewing AYA-RISE - Follow-up Questionnaire - Brief feedback interviews on AYA-RISE - In Aim 2, participants will be randomized trial into one of two groups; - Group 1: Standard Genetic Counseling/follow-up visit or - Group 2 : Standard Genetic Counseling/follow-up visit and Access to AYA-Rise - Aim 3: Semi-Structured Interviews: - Evaluate implementation outcomes using 28 semi-structured interviews with patients, family members, providers, and site principal investigators ;