Adapting mainstreaming genetic education and clinical communication materials for cancer patients of varying backgrounds.
Stephanie N Christian-Afflu, Rania Sheikh, Anna Strang and 15 others
PMID 41643404WHAT IT FOUND
61 cancer patients helped adapt genetic testing education materials.
They needed cost, timing, plain terms, and clear result types. Haitian Creole speakers found materials effortful. Use patient-reviewed materials and check understanding; standard materials are not assumed adequate.
Key findings
0161 cancer patients completed interviews, and all 59 who gave a codable helpful response found the materials helpful.
02Participants reported missing or confusing information: 16 found gene names confusing, 24 could not recall possible result types, and 10 did not recall a variant of uncertain significance.
03Haitian Creole-speaking participants reported high effort: 63.6% said the materials required a lot of mental effort, while 84.6% of Spanish-speaking and 56.3% of English-speaking participants said they did not.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
This was a formative adaptation study, not a test of whether the materials improve genetic testing uptake, decision-making, or health outcomes. Attrition was large: 143 patients were screened, 95 consented, and 61 completed interviews; non-completion included lost to follow-up, withdrawal, post-consent ineligibility, and death. The study took place at two New York City hospitals serving medically underserved patients, so results may not apply to rural areas or other settings. Interviews were by telephone and often one to two hours long, which may have limited feedback and caused fatigue. The team did not collect participants' national origins, did not tailor materials for other underrepresented groups, and did not assess broader health literacy, interpersonal, psychosocial, or health-system factors. Cultural acceptability and self-efficacy were measured indirectly, by asking about expected reactions of others or ability to use materials. No readability measure was available for Haitian Creole, so written accessibility could not be compared across all languages.
Declared interests
The authors declared no conflicts of interest; the supplied text does not state a funder.
The easy way to misread this
Do not conclude these materials improve genetic testing uptake or outcomes. This was a formative adaptation study with patient feedback, not a trial comparing the materials with standard care.