Rebecca Hernan1, Megan T Cho2, Ashley L Wilson3, Priyanka Ahimaz4, Catherine Au3, Sara M Berger3, Edwin Guzman3, Michelle Primiano3, Jessica E Shaw3, Meredith Ross3, Leyla Tabanfar3, Ilana Chilton4, Emily Griffin4, Chana Ratner5, Kwame Anyane-Yeboa4, Alejandro Iglesias4, Laura Pisani4, Jasmin Roohi4, Jimmy Duong6, Josue Martinez4, Paul Appelbaum7, Robert Klitzman8, Ruth Ottman8, Wendy K Chung9, Julia Wynn10. 1. Sarah Lawrence College, Joan H. Marks Graduate Program in Human Genetics, Bronxville, NY, USA; Division of Clinical Genetics, Department of Pediatrics, Columbia University Irving Medical Center, New York, NY, USA. 2. Sarah Lawrence College, Joan H. Marks Graduate Program in Human Genetics, Bronxville, NY, USA; GeneDx, 207 Perry Parkway, Gaithersburg, MD, USA. 3. Division of Clinical Genetics, Department of Pediatrics, New York Presbyterian Hospital, Columbia University, New York, NY, USA. 4. Division of Clinical Genetics, Department of Pediatrics, Columbia University Irving Medical Center, New York, NY, USA. 5. Long Island University, LIU Post Genetic Counseling Graduate Program, Brookville, NY, USA. 6. Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, NY, USA. 7. Department of Psychiatry, Columbia University Irving Medical Center and NY State Psychiatric Institute, New York, NY, USA. 8. G.H. Sergievsky Center and Departments of Epidemiology and Neurology, Columbia University Irving Medical Center, and NY State Psychiatric Institute, New York, NY, USA. 9. Division of Clinical Genetics, Department of Pediatrics, Columbia University Irving Medical Center, New York, NY, USA; Department of Medicine, Columbia University Irving Medical Center, New York, NY, USA. 10. Division of Clinical Genetics, Department of Pediatrics, Columbia University Irving Medical Center, New York, NY, USA. Electronic address: jw2500@columbia.edu.
Abstract
OBJECTIVE: Growing use of clinical exome sequencing (CES) has led to an increased burden of genomic education. Self-guided educational tools can minimize the educational burden for genetic counselors (GCs). The effectiveness of these tools must be evaluated. METHODS:Parents of patients offered CES were randomized to watch educational videos before their visit or to receive routine care. Parents and GCs were surveyed about their experiences following the sessions. The responses of the video (n = 102) and no-video (n = 105) groups were compared. RESULTS: GCs reported no significant differences between parents in the video and no-video groups on genetics knowledge or CES knowledge. In contrast, parents' scores on genetics knowledge questions were lower in the video than no-video group (p = 0.007). Most parents reported the videos were informative, and the groups did not differ in satisfaction with GCs or decisions to have CES. CONCLUSION: GCs and parents perceived the videos to be beneficial. However, lower scores on genetics knowledge questions highlight the need for careful development of educational tools. PRACTICE IMPLICATIONS: Educational tools should be developed and assessed for effectiveness with the input of all stakeholders before widespread implementation. Better measures of the effectiveness of these educational tools are needed.
RCT Entities:
OBJECTIVE: Growing use of clinical exome sequencing (CES) has led to an increased burden of genomic education. Self-guided educational tools can minimize the educational burden for genetic counselors (GCs). The effectiveness of these tools must be evaluated. METHODS: Parents of patients offered CES were randomized to watch educational videos before their visit or to receive routine care. Parents and GCs were surveyed about their experiences following the sessions. The responses of the video (n = 102) and no-video (n = 105) groups were compared. RESULTS: GCs reported no significant differences between parents in the video and no-video groups on genetics knowledge or CES knowledge. In contrast, parents' scores on genetics knowledge questions were lower in the video than no-video group (p = 0.007). Most parents reported the videos were informative, and the groups did not differ in satisfaction with GCs or decisions to have CES. CONCLUSION: GCs and parents perceived the videos to be beneficial. However, lower scores on genetics knowledge questions highlight the need for careful development of educational tools. PRACTICE IMPLICATIONS: Educational tools should be developed and assessed for effectiveness with the input of all stakeholders before widespread implementation. Better measures of the effectiveness of these educational tools are needed.
Authors: Elizabeth G Liles; Michael C Leo; Amanda S Freed; Kathryn M Porter; Jamilyn M Zepp; Tia L Kauffman; Erin Keast; Carmit K McMullen; Inga Gruß; Barbara B Biesecker; Kristin R Muessig; Donna J Eubanks; Laura M Amendola; Michael O Dorschner; Bradley A Rolf; Gail P Jarvik; Katrina A B Goddard; Benjamin S Wilfond Journal: Genet Med Date: 2022-05-06 Impact factor: 8.864
Authors: Miranda L G Hallquist; Eric P Tricou; Kelly E Ormond; Juliann M Savatt; Curtis R Coughlin; W Andrew Faucett; Laura Hercher; Howard P Levy; Julianne M O'Daniel; Holly L Peay; Melissa Stosic; Maureen Smith; Wendy R Uhlmann; Hannah Wand; Karen E Wain; Adam H Buchanan Journal: Genome Med Date: 2021-04-29 Impact factor: 11.117