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<a target="_blank" rel="noopener" href="https://fatcat.wiki/container/kzkly2vie5byrnahel322orgjy" style="color: black;">Journal of Genetic Counseling</a>
Recent discourse surrounding Down syndrome prenatal testing emphasizes the need for communicating balanced, up-to-date information. The 2011 NSGC BPractice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down syndrome^supported genetic counselors in this endeavor. Our group's previous work found that counselors discuss the guidelines' essential concepts almost always while frequency of discussion of lived experience (LE) concepts was most variable. This follow-up study focused<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.1007/s10897-015-9893-x">doi:10.1007/s10897-015-9893-x</a> <a target="_blank" rel="external noopener" href="https://www.ncbi.nlm.nih.gov/pubmed/26498970">pmid:26498970</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/ko3slkk56zewfp6hwtlouc3gte">fatcat:ko3slkk56zewfp6hwtlouc3gte</a> </span>
more »... on a deeper understanding of factors that contribute to practice guidelines deviations, specifically related to LE discussions. Participants self-identified at completion of our group's 2014 quantitative survey (N=45) were stratified into 3 groups according to their average discussion frequency (high, average, low) of LE concepts. Semi-structured interviews (N=8) focused on 3 scenarios in which a patient was seen in-person for a prenatal diagnosis of Down syndrome and was (1) unsure, (2) planning to terminate or (3) planning to continue the pregnancy. Questions focused on what counselors did/ did not communicate regarding the diagnosis and their rationale. Transcripts were independently coded holistically by 3 group members in an iterative process to identify process-related codes. The group coalesced the codes into themes related to the study objective. Counselor considerations of patients' needs and desires for information were the most significant contributors to deviation from the guidelines during a prenatal Down syndrome diagnosis session. In particular, counselors' concerns about overwhelming the patient and being perceived as unsupportive were recurrent. Our results suggest that genetic counselors strive for a client-centered approach by prioritizing both patients' explicit and implicit informational wants and needs over providing comprehensive information for a prenatal diagnosis of Down syndrome. Deviations from the guidelines were a students' expectations. Further research should investigate what factors moderate this relationship and explore the relationship between supervision perceptions and actual performance. Despite a recognized need in the medical community for improved integration of genetics into practice, significant barriers limit widespread implementation. Key to successful implementation is a genetically educated and aware workforce. We describe a novel approach to genetics education for the non-geneticist clinician that uses best practices in adult education, is highly interactive and clinically relevant, and utilizes the benefits of both in-person and digital delivery for maximum educational impact. The Jackson Laboratory and the American Society of Human Genetics developed and implemented an interactive educational program to improve the clinical skills of primary care providers (PCPs) in assessing and managing genetic risk for cancer. This blended learning program consists of online pre-work, 6.5 hours of in-person content, monthly communications, and access to digital resources. The approach to in-person curriculum emphasizes skill-building by modeling a patient interaction followed by immersing the participants in practice cases with immediate expert feedback. The program includes presentation slides with professional graphics and supporting key messages and notes, facilitator guides, and handouts (factsheets and tools) as well as reusable digital educational activities. The program was initially piloted with 21 PCPs in 2014. Participants demonstrated significantly improved confidence, attitudes, and knowledge related to genomic risk assessment. These early results suggest that this innovative program can build PCP skills in the assessment and management of hereditary cancer, supporting improved patient care. This model of blended learning is easily reusable and sustainable to implement again after the initial development is complete. Based on this successful pilot, the program will be implemented broadly and will serve as a framework for future programs and expanded audiences to improve clinical integration of genetics into practice.
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