Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing

Summary

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)

Eligibility

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.

Conditions3

Locations1 site

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