Barriers to family history collection among Spanish-speaking primary care patients: a BRIDGE qualitative study

Objects: Family history is an important tool for assessing disease risk, and tailoring recommendations for screening and genetic services referral. This study explored barriers to family history collection with Spanish-speaking patients. Methods: This qualitative study was conducted in two US healthcare systems. We conducted semi-structured interviews with medical assistants, physicians, and interpreters with experience collecting family history for Spanish-speaking patients. Results: The most common patient-level barrier was the perception that some Spanish-speaking patients had limited knowledge of family history. Interpersonal communication barriers related to dialectical differences and decisions about using formal interpreters vs. Spanish-speaking staff. Organizational barriers included time pressures related to using interpreters, and ad hoc workflow adaptations for Spanish-speaking patients that might leave gaps in family history collection. Conclusions: This study identified multi-level barriers to family history collection with Spanish-speaking patients in primary care. Findings suggest that a key priority to enhance communication would be to standardize processes for working with interpreters. Innovation: To improve communication with and care provided to Spanish-speaking patients, there is a need to increase healthcare provider awareness about implicit bias, to address ad hoc workflow adjustments within practice settings, to evaluate the need for professional interpreter services, and to improve digital tools to facilitate family history collection

Variability in conceptualizations and measurement of genetic literacy

Objective: To examine definitions and measures for genetic literacy in the published literature, and the associations between commonly utilized measures. Methods: We completed a systematic review searching eight databases for empirical articles containing quantitative measures of genetic literacy. Articles were assessed for study properties, definitions, and measure characteristics. An online survey was then completed by 531 U.S. adults to examine correlations between frequently used genetic literacy measures. Results: 92 articles met inclusion criteria for the systematic review. Articles rarely defined genetic literacy, and existing definitions showed inconsistencies in the knowledge and cognitive domains that comprise genetic literacy. Definitions frequently included objective conceptual knowledge, comprehension, and applied knowledge, however most measures only assessed objective or subjective knowledge. Genetic literacy measures were infrequently assessed for psychometric properties and the content domains assessed by measures varied considerably. Correlation analyses showed weak to moderate relationships between genetic literacy measures. Conclusion: A comprehensive and consistent definition of genetic literacy and its cognitive and conceptual domains should be implemented to inform the development of concordant measurement tools and improve research and clinical care in genetics. Innovation: We examine and compare definitions and measures of genetic literacy, suggest a more comprehensive definition, and recommendations for research development