Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing
Genetic Predisposition to Disease, Genetic Predisposition
About this trial
This is an interventional health services research trial for Genetic Predisposition to Disease focused on measuring Genetic Predisposition to Disease, Genetic Predisposition, Genetic Testing, Cancer Risk Syndromes, VUS, Variant of Uncertain Significance, Pathogenic Variant
Eligibility Criteria
Inclusion Criteria AIM 1: YA Patients: Ages 18-39 years, inclusive. Has had previous cancer genetic testing, with a finding of a pathogenic variant or VUS; patient has previously received results from the clinical team. English-speaking and -reading. Receiving care at DFCI. Not undergoing active cancer therapy at the time of approach. Clinicians: Cancer risk physicians (oncologists, gastroenterologists, geneticists), oncologists, nurse practitioners, physician assistants, or genetic counselors. English-speaking and -reading. Cares for YAs aged 18-39 with cancer risk syndromes. Inclusion Criteria AIM 2: YA Patients: Ages 18-39 years, inclusive. Has had previous cancer genetic testing, with a finding of a pathogenic variant or VUS; patient has previously received results from the clinical team. English-speaking and -reading. Receiving care at Dana-Farber Cancer Institute. Did not participate in a stakeholder interview (Aim 1). Not undergoing active cancer therapy at the time of approach. Clinicians: Oncologists, nurse practitioners, cancer risk physicians, or genetic counselors. English-speaking and -reading. Caring for a participating YA.
Sites / Locations
- Dana Farber Cancer Institute
Arms of the Study
Arm 1
Arm 2
Experimental
Experimental
Nest Refinement Phase
Nest Pilot Phase
20 participants and clinicians will complete study procedures as outlined: Nest portal orientation and access. Semi-structured, 30-minute interviews. Solicited feedback on content and processes will refine the intervention for a pilot phase.
10 Participants and 10 clinicians will complete study procedures as outlined: Baseline survey (participant). Standard clinic visit. Nest portal orientation and access (participant and clinician). Post-visit survey (participant and clinician). Brief, 30-minute, semi-structured interview (participant and clinician).