Intervention For Adolescents and Young Adults (AYAs) With Cancer Risk Syndromes

You may be eligible if

• 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
• 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
• 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