intervention for ayas with cancer risk syndromes

Conditions: Cancer Risk Syndrome

Summary: 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

Eligibility criteria:
inclusion criteria: * across all study aims, we will enroll aya patients, family members/caregivers, and providers. aim 1, part 1 - stakeholder interviews aya patients 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 family caregivers-inclusion criteria 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 providers inclusion criteria (oncologists, nurses, genetic counselors, social workers, or psychologists) 1. english-speaking and reading 2. caring for ayas aged 12-24 with cancer risk syndromes at any of the study sites aim 1, part 2 - intervention pilot aya patients 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 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 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) family caregivers 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) aim 3 - semi-structured interviews aya patients, family caregivers, providers, and site pis 1. participated in the intervention arm of aim 2, or 2. is a site principal investigator at one of the 4 participating study sites

Keywords: cancer risk syndrome lifraumeni syndrome association (lfsa) youth conference