Adapting mainstreaming genetic education and clinical communication materials for cancer patients of varying backgrounds

Mainstreaming genetic testing models that allow non-genetics healthcare professionals to order testing and then return results to patients with the aid of genetic counselors have shown promising outcomes. However, prior studies have not addressed the informational and communication needs of minority and medically underserved patients, who stand to benefit from greater genetic testing access. In the initial phase of a trial to develop, test, and evaluate a linguistically and culturally appropriate mainstreaming model for hereditary cancer multigene panel testing among cancer patients, we used formative research methods including expert review, revision, and transcreation to adapt educational materials (pre-test brochure and video) and clinical communication materials (post-test clinic visit summary and family letter).

We conducted cognitive interviews with participants (N = 61) recruited from two US community hospitals to evaluate the cultural and linguistic appropriateness of these adapted materials and identify areas for further refinement. Participants included a diverse sample of English- (59 %), Haitian Creole- (20 %), and Spanish- (21 %) speaking patients with varying educational levels and cancer diagnoses. Interviews, guided by the Learner Verification and Revision framework, provided insight to enhance materials based on attraction, comprehension, cultural acceptability, and self-efficacy.

Although most participants found the materials useful, informative, and relevant, 41.7 % of participants thought the materials required a lot of mental effort, particularly among Haitian Creole-speaking participants. Critical areas for refinement included a more thorough explanation of gene nomenclature, testing procedures, and types of possible test results. Through integrating expert and participant feedback, the readability of all materials improved (e.g., English-language materials improved from grade 11.4 to 7.6).

Cognitive interviews identified important comprehension gaps that were addressable prior to integrating these materials into a larger trial of the mainstreaming genetic testing model.

Patient-centered material design is critical to improving the reach of genetic services to diverse audiences.