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Rivera Rivera J, Snir M, Simons E, Schmidlen T, Sholeh M, Maconi ML, Geiss C, Fulton H, Barton L, Gonzalez BD, Permuth J, Vadaparampil S
Developing and Assessing a Scalable Digital Health Tool for Pretest Genetic Education in Patients With Early-Onset Colorectal Cancer: Mixed Methods Design
Developing and Assessing a Scalable Digital Health Tool for Pretest Genetic Education in Early-Onset Colorectal Cancer Patients: Mixed Methods Desing
Jessica Rivera Rivera;
Moran Snir;
Emilie Simons;
Tara Schmidlen;
Misha Sholeh;
Melinda Leigh Maconi;
Carley Geiss;
Hayden Fulton;
Lauram Barton;
Brian D. Gonzalez;
Jenniferp Permuth;
Susan Vadaparampil
ABSTRACT
Background:
National guidelines recommend germline genetic testing (GT) for all patients with early-onset colorectal cancer (EOCRC). Due to new advances in targeted therapies and genetic testing, this guideline will continually be expanded to broader groups of CRC patients. Yet, there is a critical shortage of genetic counselors to provide education to support informed consent for testing. There is a need in identifying alternative approaches to deliver genetic services and expediting the genetic testing process.
Objective:
We developed a pretest education intervention (Nest-CRC) to facilitate uptake of GT among EOCRC patients. EOCRC patients and providers reviewed Nest-CRC and their reactions and recommendations were captured using a mixed-method approach.
Methods:
English and Spanish-speaking EOCRC patients (n=39) and providers (n=13) completed surveys on genetic services and use of Nest-CRC. Following the Learner Verification approach, we conducted two phases of semi-structured interviews and assessed self-efficacy, attraction, comprehension, cultural acceptability, and usability of Nest-CRC. After each phase, Nest-CRC was refined based on participant recommendations.
Results:
Across both phases, most participants (88%-100%) agreed that all 5 education modules were easy to understand and helpful. Thirteen patients reported no history of GT, 85% (n=11) were interested and 15% (n=2) were unsure about GT after completing Nest-CRC. Participants reported Nest-CRC provided enough information to decide about GT. Nest-CRC was acceptable to individuals from varied backgrounds and participants found it attractive in design and easy to comprehend and use.
Conclusions:
Nest-CRC was refined based on participant recommendations and will be re-evaluated. Pilot testing revealed Nest-CRC to be a promising strategy to facilitate pretest education and promote GT. Clinical Trial: N/A
Citation
Please cite as:
Rivera Rivera J, Snir M, Simons E, Schmidlen T, Sholeh M, Maconi ML, Geiss C, Fulton H, Barton L, Gonzalez BD, Permuth J, Vadaparampil S
Developing and Assessing a Scalable Digital Health Tool for Pretest Genetic Education in Patients With Early-Onset Colorectal Cancer: Mixed Methods Design
