An accessible, relational, inclusive, and actionable (ARIA) model of genetic counseling compared with usual care: Results of a randomized controlled trial

Joseph, Galen; Leo, Michael C.; Riddle, Leslie; Guerra, Cláudia; Amendola, Laura M.; Gilmore, Marian J.; Rolf, Bradley A; Dorschner, Michael O.; Zepp, Jamilyn; Biesecker, Barbara B.; Caruncho, Mikaella; Hunter, Jessica Ezzell; Keast, Erin; Lewis, Hannah; Duenas, Devan M.; Kauffman, Tia L.; Bulkley, Joanna E.; Anderson, Katherine; Jarvik, Gail P.; Goddard, Katrina A.B.; Wilfond, Benjamin S.

doi:10.1016/j.gim.2022.07.025

Cited by 8 publications

(4 citation statements)

References 27 publications

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“…Changes in register can also alter the flow of the conversation; an erroneous higher register can make it difficult for the patient to understand, and as a result, they may request clarification or feel overwhelmed and tune out. The genetic counselors participating in the CHARM study strived to use plain, everyday language to make their communication accessible to participants of all literacy levels (Joseph et al, 2022; Mittendorf et al, 2021). However, interpreters frequently raised their register, inadvertently undoing the genetic counselor's efforts to make their speech more accessible, and potentially making it more difficult for patients of limited health literacy to understand (Table 4, ex 2).…”

Section: Resultsmentioning

confidence: 99%

“…Initial studies suggest that interpreters have limited knowledge, understanding, training, and experience with genetics and genomics (Gutierrez et al, 2017;Joseph & Guerra, 2015;Lara-Otero et al, 2019;Riddle et al, 2022;Uebergang et al, 2021). Given the complexity of genomic medicine, and the communication challenges even in language concordant discussions of genetics (Joseph et al, 2017(Joseph et al, , 2022, the objective of this study was to identify interpretation challenges and clinically significant errors specific to exome sequencing in order to identify training needs for interpreters and genetic counselors, with the goal of improving communication and health equity for LEP patients in genomic medicine.…”

Section: Introductionmentioning

confidence: 99%

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Medical interpreter‐mediated genetic counseling for Spanish preferring adults at risk for a hereditary cancer syndrome

Joseph

Lindberg

Guerra

et al. 2023

Journal of Genetic Counseling

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The objective of this study was to identify interpretation challenges specific to exome sequencing and errors of potential clinical significance in the context of genetic counseling for adults at risk for a hereditary cancer syndrome. Thirty transcripts of interpreter‐mediated telephone results disclosure genetic counseling appointments were coded for errors by bilingual researchers, and the coders applied an overall rating to denote the degree to which the errors interfered with communication overall. Genetic counselors reviewed a subset of errors flagged for potential clinical significance to identify those likely to have clinical impact. Qualitative interviews with 19 interpreters were analyzed to elucidate the challenges they face in interpreting for genetic counseling appointments. Our analysis identified common interpretation errors such as raising the register, omissions, and additions. Further, we found errors specific to genetic counseling concepts and content that appeared to impact the ability of the genetic counselor to accurately assess risk. These errors also may have impacted the patient's ability to understand their results, access appropriate follow‐up care, and communicate with family members. Among interpreters' strengths was the use of requests for clarification; in fact, even more use of clarification would have been beneficial in these encounters. Qualitative interviews surfaced challenges stemming from the structure of interpreter work, such as switching from medical and nonmedical interpretations without substantial breaks. Importantly, while errors were frequent, most did not impede communication overall, and most were not likely to impact clinical care. Nevertheless, potentially clinically impactful errors in communication of genetics concepts may contribute to inequitable care for limited English proficient patients and suggest that additional training in genetics and specialization in healthcare may be warranted. In addition, training for genetic counselors and guidance for patients in working effectively with interpreters could enhance interpreters' transmission of complex genetic concepts.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Medical interpreter‐mediated genetic counseling for Spanish preferring adults at risk for a hereditary cancer syndrome

Joseph

Lindberg

Guerra

et al. 2023

Journal of Genetic Counseling

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“…These timepoints aligned with survey timepoints in the overall CHARM study [ 11 ]. The interviews were designed to be open-ended (ethnographic) explorations of individuals’ experiences with sequencing in the CHARM study to elucidate the workings of a communication intervention [ 15 ]. As such, we explored perceptions of counseling communication and interest in and ability to engage in the counseling process.…”

Section: Methodsmentioning

confidence: 99%

Refining a Multifaceted Model of Perceived Utility of Genomic Sequencing Results

Duenas,

Riddle,

Guerra

et al. 2023

Public Health Genomics

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Introduction: Research on the perceived utility of genomic sequencing has focused primarily on pediatric populations and on individuals and families with rare genetic diseases. Here, we evaluate how well a multifaceted perceived utility model developed with these populations applies to a diverse, adult population aged 18-49 at risk for hereditary cancer and propose new considerations for the model. Methods: Participants received clinical genomic sequencing in the Cancer Health Assessments Reaching Many (CHARM) study. Semi-structured qualitative interviews were conducted with a subset of participants at one and six months after results disclosure. We used an approach influenced by grounded theory to examine perceptions of the utility of genomic sequencing and analyzed how utility in CHARM mapped to the published multifaceted perceived utility model, noting which domains were represented or absent, and which were most salient to our population. Results: Participants’ discussions of utility often involved multiple domains and revealed the variety of ways in which receiving sequencing results can impact one’s life. Results demonstrated that an individual’s perception of utility can change over the life course when sequenced at a relatively young age and may be influenced by the resources available to them to act on the results. Discussion/Conclusion: Our findings demonstrate the relevance of a multifaceted perceived utility model for a diverse adult population at risk for hereditary cancer. We identified refinements that could make the model more robust, including emphasizing the overlapping nature of the domains, and the importance of life stage and personal resources to the perception of utility.

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“…This training included relationship-oriented communication skills such as establishing a few key messages for the visit, explaining those key messages without using genetic jargon, incorporating teach-back to create opportunities for clarification and reiteration of key messages, and making directive, personalized recommendations for next steps. Participants were randomized to ARIA or usual care genetic counseling to receive their test results [24]. Accuracy of recall of test results and perceived understanding were high for all participants; however, ARIA participants endorsed higher levels of relationship-building with their genetic counselor.…”

Section: Relationship-oriented Communication Strategies Are Important...mentioning

confidence: 99%

Improving Care for Marginalized Populations at Risk for Hereditary Cancer Syndromes: Innovations that Expanded Reach in the CHARM Study

Gilmore,

Knerr,

Kraft

et al. 2023

Public Health Genomics

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An accessible, relational, inclusive, and actionable (ARIA) model of genetic counseling compared with usual care: Results of a randomized controlled trial

Cited by 8 publications

References 27 publications

Medical interpreter‐mediated genetic counseling for Spanish preferring adults at risk for a hereditary cancer syndrome

Medical interpreter‐mediated genetic counseling for Spanish preferring adults at risk for a hereditary cancer syndrome

Refining a Multifaceted Model of Perceived Utility of Genomic Sequencing Results

Improving Care for Marginalized Populations at Risk for Hereditary Cancer Syndromes: Innovations that Expanded Reach in the CHARM Study

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