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A Survey of Genetic Counselors' Current Methods of Implementing

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A Survey of Genetic Counselors' Current Methods of Implementing A Survey of Genetic Counselors’ Current Methods of Implementing Telegenetics Services Thesis Presented in Partial Fulfillment of the Requirements for the Degree Master of Science in the Graduate School of The Ohio State University By Brenda Isabel Zuniga Graduate Program in Genetic Counseling The Ohio State University 2018 Master’s Examination Committee Kate Shane, MS, LGC, Advisor Dawn C. Allain, MS, LGC Lindsey Byrne, MS, LGC Kate Lynch, MS, LGC, Consultant Copyrighted by Brenda Isabel Zuniga 2018 2 Abstract The field of clinical genetics is rapidly evolving, leading to an increase in demand for genetic counseling services. The use of telegenetics allows genetic counselors and other genetics providers to increase access to services by facilitating the ability to communicate with patients across long distances and reach underserved populations. The aims of this study were to characterize the various components of the telegenetics delivery model, as well as describe the perceived benefits and limitations. Full members of the National Society of Genetic Counselors (NSGC) who currently provide telegenetic services or have previously provided telegenetic services to counsel patients were invited to participate in a web-based survey. Eligible respondents were asked to complete 48 items related to the logistics of the delivery of telegenetic services, perceived benefits and limitations, useful resources, and recommendations for improvement of the delivery of telegenetic services. One-hundred fifty-nine members of the NSGC responded. Fifty-two percent and 23.4% of respondents reported providing telegenetic services in the cancer and prenatal specialties respectively, the remainder reported providing telegenetic services in a variety of other specialties. Sixty percent of respondents reported providing telegenetic services in one state and 3.8% in all 50 states, with the majority of respondents (49.4%) reporting that they hold a valid genetic counselor practice license in only one state and only 1.9% had a license in 20 states. The most common software ii platforms used for video and audio access were Vidyo (13.9%), Skype (12.0%), and Cisco WebEx (10.8%). Forty-three percent of respondents reported software as top barriers/limitations of the delivery of telegenetic services. Seventy-seven percent of respondents report they rely on their support staff to schedule the appointment; however, scheduling continues to be a significant barrier. Twenty-seven percent of respondents reported billing the patient for the telegenetic services and 38.0% reported not. Although this study found an increase in genetic counselors who bill for telegenetic services compared to previous studies, billing is still perceived as the biggest barrier to the delivery of telegenetic services. It is hoped that the study findings will help provide a framework for the development of telegenetic practice guidelines and service delivery logistics. In addition, it may aid in the incorporation of telegenetic services into the practice of other genetic professionals. iii Dedication This document is dedicated to my parents Hilda and Jamie, my sisters Vicky and Caitlyn, and my grandmother Virginia. iv Acknowledgments I would like to first thank my thesis advisor, Kate Shane, for her expertise and support throughout the process. I would like to also acknowledge my thesis committee members and consultant for their constant support and professional expertise: Dawn Allain, Lindsey Byrne, and Kate Lynch. I thank the NSGC Health IT SIG for the research award used to fund this study and the genetic counselors who participated in this research study. A special thanks to Jonathan Race for statistical support. I am also thankful for the continuous support of the graduate program leaders Dawn Allain and Leigha Senter. Finally, I would like to thank my mother, Hilda, and my sisters Vicky and Caitlyn for their unconditional love and ongoing encouragement throughout this journey. v Vita May 2004…………………………………………………Frederick High School May 2009…………………………………………………B.S. Chemistry, University of Colorado – Denver 2009 to 2013……………………………………………...Cytogenetics Technologist, Children Mercy Hospital 2013 to 2016……………………………………………...Cytogenetics Technologist, Colorado Genetics Lab 2016 to present……………………………………………M.S. Genetic Counseling, The Ohio State University Fields of Study Major Field: Genetic Counseling vi Table of Contents Abstract ............................................................................................................................... ii Dedication .......................................................................................................................... iv Acknowledgments............................................................................................................... v Vita ..................................................................................................................................... vi List of Tables ..................................................................................................................... ix List of Figures ..................................................................................................................... x Chapter 1. Introduction ....................................................................................................... 1 History of Telegenetics ................................................................................................... 1 Need for Telegenetics ..................................................................................................... 3 Acceptance of Telegenetics ............................................................................................ 4 Benefits of Telegenetics .................................................................................................. 5 The Logistics of the Service Delivery Model ................................................................. 6 Hardware and software ............................................................................................... 6 Billing and Funding .................................................................................................... 7 Licensure ..................................................................................................................... 8 Patient and genetic counselor location ........................................................................ 9 Specialty .................................................................................................................... 10 Visual aids ................................................................................................................. 11 Genetic testing, result disclosure and appointment length........................................ 11 Demographics of genetic counselors providing telegenetics .................................... 12 Limitations and Barriers of Telegenetics ...................................................................... 13 Study Aims.................................................................................................................... 15 Chapter 2. Methods ........................................................................................................... 16 Study Design ................................................................................................................. 16 Target Population .......................................................................................................... 16 Eligibility Criteria ..................................................................................................... 17 vii Exclusion Criteria ..................................................................................................... 17 Survey Instrumentation ................................................................................................. 17 Participant Incentives .................................................................................................... 18 Statistical Data Analysis ............................................................................................... 19 Chapter 3. Results ............................................................................................................. 20 Study Sample ................................................................................................................ 20 Specialty area ............................................................................................................ 20 Years of experience................................................................................................... 21 Employment setting .................................................................................................. 22 Number of states in which each genetic counselor provides telegenetics ................ 23 Licensure ................................................................................................................... 24 The Logistics of the Telegenetics Appointment ........................................................... 25 Software and hardware ............................................................................................. 25 Patient referring provider .......................................................................................... 28 Appointment scheduling and patient records available to the genetic counselor prior to the appointment....................................................................................................
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