Salma Shickh1,2, Sara A Rafferty3,4, Marc Clausen2, Rita Kodida2, Chloe Mighton1,2, Seema Panchal5, Justin Lorentz6, Thomas Ward5, Nicholas Watkins5, Christine Elser7,8, Andrea Eisen6, June C Carroll5,9, Emily Glogowski10, Kasmintan A Schrader11,12, Jordan Lerner-Ellis13,14,15, Raymond H Kim3,7,8, David Chitayat3,4,5, Cheryl Shuman3,4, Yvonne Bombard16,17. 1. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. 2. St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada. 3. Hospital for Sick Children, Toronto, ON, Canada. 4. Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada. 5. Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada. 6. Sunnybrook Health Sciences Centre, Toronto, ON, Canada. 7. University Health Network, Toronto, ON, Canada. 8. Faculty of Medicine, University of Toronto, Toronto, ON, Canada. 9. Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada. 10. GeneDx, Gaithersburg, MD, USA. 11. BC Cancer, Vancouver, BC, Canada. 12. Department of Medical Genetics, The University of British Columbia, Vancouver, BC, Canada. 13. Lunenfeld Tanenbaum Research Institute, Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada. 14. Pathology and Laboratory Medicine, Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada. 15. Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, ON, Canada. 16. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. yvonne.bombard@utoronto.ca. 17. St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada. yvonne.bombard@utoronto.ca.
Abstract
PURPOSE: Alternative models of genetic counseling are needed to meet the rising demand for genomic sequencing. Digital tools have been proposed as a method to augment traditional counseling and reduce burden on professionals; however, their role in delivery of genetic counseling is not established. This study explored the role of the Genomics ADvISER, a digital decision aid, in delivery of genomic counseling. METHODS: We performed secondary analysis of 52 pretest genetic counseling sessions that were conducted over the course of a randomized controlled trial evaluating the effectiveness of the Genomics ADvISER. As part of the trial, participants were randomized to receive standard counseling or use the tool and then speak with a counselor. A qualitative interpretive description approach using thematic analysis and constant comparison was used for analysis. RESULTS: In the delivery of genomic counseling, the Genomics ADvISER contributed to enhancing counseling by (1) promoting informed dialogue, (2) facilitating preference-sensitive deliberation, and (3) deepening personalization of decisions, all of which represent fundamental principles of patient-centered care: providing clear high-quality information, respecting patients' values, preferences, and expressed needs, and providing emotional support. CONCLUSION: This study demonstrates that our digital tool contributed to enhancing patient-centered care in the delivery of genomic counseling.
PURPOSE: Alternative models of genetic counseling are needed to meet the rising demand for genomic sequencing. Digital tools have been proposed as a method to augment traditional counseling and reduce burden on professionals; however, their role in delivery of genetic counseling is not established. This study explored the role of the Genomics ADvISER, a digital decision aid, in delivery of genomic counseling. METHODS: We performed secondary analysis of 52 pretest genetic counseling sessions that were conducted over the course of a randomized controlled trial evaluating the effectiveness of the Genomics ADvISER. As part of the trial, participants were randomized to receive standard counseling or use the tool and then speak with a counselor. A qualitative interpretive description approach using thematic analysis and constant comparison was used for analysis. RESULTS: In the delivery of genomic counseling, the Genomics ADvISER contributed to enhancing counseling by (1) promoting informed dialogue, (2) facilitating preference-sensitive deliberation, and (3) deepening personalization of decisions, all of which represent fundamental principles of patient-centered care: providing clear high-quality information, respecting patients' values, preferences, and expressed needs, and providing emotional support. CONCLUSION: This study demonstrates that our digital tool contributed to enhancing patient-centered care in the delivery of genomic counseling.
Authors: Barbara A Bernhardt; Myra I Roche; Denise L Perry; Sarah R Scollon; Ashley N Tomlinson; Debra Skinner Journal: Am J Med Genet A Date: 2015-07-21 Impact factor: 2.802
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Authors: Hana Bangash; Ahmed Makkawy; Justin H Gundelach; Alexandra A Miller; Kimberly A Jacobson; Iftikhar J Kullo Journal: JMIR Hum Factors Date: 2022-02-15
Authors: Salma Shickh; Daena Hirjikaka; Marc Clausen; Rita Kodida; Chloe Mighton; Emma Reble; Jordan Sam; Seema Panchal; Melyssa Aronson; Tracy Graham; Susan Randall Armel; Emily Glogowski; Christine Elser; Andrea Eisen; June C Carroll; Cheryl Shuman; Emily Seto; Nancy N Baxter; Adena Scheer; Serena Shastri-Estrada; Geoff Feldman; Kevin E Thorpe; Kasmintan A Schrader; Jordan Lerner-Ellis; Raymond H Kim; Hanna Faghfoury; Yvonne Bombard Journal: BMJ Open Date: 2022-04-29 Impact factor: 3.006