Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing
Purpose
This research is being done to develop the electronic platform Nest for young adults (ages 18-39) who have had prior cancer genetic testing. The platform will give patients and their clinicians access to continuously updated information about both pathogenic variants and variants of uncertain significance (VUS). The name of the intervention used in this research study is: Nest portal (electronic platform for patients and clinicians)
Conditions
- Genetic Predisposition to Disease
- Genetic Predisposition
Eligibility
- Eligible Ages
- Between 18 Years and 39 Years
- Eligible Genders
- All
- Accepts Healthy Volunteers
- Yes
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.
Study Design
- Phase
- N/A
- Study Type
- Interventional
- Allocation
- Non-Randomized
- Intervention Model
- Single Group Assignment
- Primary Purpose
- Health Services Research
- Masking
- None (Open Label)
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
|
Experimental Nest Refinement 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. |
|
|
Experimental Nest 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). |
|
Recruiting Locations
Boston, Massachusetts 02115
More Details
- Status
- Recruiting
- Sponsor
- Dana-Farber Cancer Institute
Detailed Description
The goal of the electronic platform Nest is to help patients understand and manage genetic test results and recommended care and to help clinicians with access to results and recommendations, facilitating orders, and documentation. The portal has two parts, one for participants and one for clinicians. For the first phase of the study, participants will give their feedback on the Nest portal's content and processes that will guide refinement of the portal. The Pilot phase will test the feasibility and acceptability of the intervention. The research study procedures include a baseline survey, using the portal after receiving a brief orientation from the study team, a follow-up survey, and then a 30-minute interview. Participants will be in this research study for up to 2 hours. It is expected that about 40 people will take part in this research study. The electronic platform is being developed by Nest Genomics.