Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study
Introduction In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the f...
| Main Authors: | , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2024-04-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/14/4/e085472.full |
| _version_ | 1797202239363743744 |
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| author | Ashley Petersen Elena R Fisher Deborah Cragun Robert F Dedrick Crystal Y Lumpkins Mariana Ramírez Kimberly A Kaphingst Ian M MacFarlane Krista Redlinger-Grosse Abdirashid Shire Kathleen A Culhane-Pera Heather A Zierhut |
| author_facet | Ashley Petersen Elena R Fisher Deborah Cragun Robert F Dedrick Crystal Y Lumpkins Mariana Ramírez Kimberly A Kaphingst Ian M MacFarlane Krista Redlinger-Grosse Abdirashid Shire Kathleen A Culhane-Pera Heather A Zierhut |
| author_sort | Ashley Petersen |
| collection | DOAJ |
| description | Introduction In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA. Our community-engagement and provider-engagement approach is crucial to develop recommendations for quality, culturally informed GC care, which are greatly needed to improve GC practice.Methods and analysis A mixed methods, sequential explanatory design will be used to collect and analyze: audio-recorded GC sessions in cancer, cardiac, and prenatal/reproductive genetic indications; pre-visit and post-visit quantitative surveys capturing patient experiences and outcomes and post-visit qualitative interview data. A novel, practical checklist will measure GC communication skills. Coincidence analysis will identify patterns of GC skills that are consistent with high scores on patient-reported measures. Two-level, multilevel models will be used to evaluate how GC communication skills and other session/patient characteristics predict patient-reported outcomes. Four community advisory boards (CABs) and a genetic counselor advisory board will inform the study design and analysis.Ethics and dissemination This study has been approved by the single Institutional Review Board of the University of Minnesota. This research poses no greater than minimal risk to participants. Results from this study will be shared through national and international conferences and through community-based dissemination as guided by the study’s CABs. A lay summary will also be disseminated to all participants. |
| first_indexed | 2024-04-24T08:00:17Z |
| format | Article |
| id | doaj.art-32a08628e9514be6b580bfb9b301030a |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2024-04-24T08:00:17Z |
| publishDate | 2024-04-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-32a08628e9514be6b580bfb9b301030a2024-04-17T18:45:08ZengBMJ Publishing GroupBMJ Open2044-60552024-04-0114410.1136/bmjopen-2024-085472Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory studyAshley Petersen0Elena R Fisher1Deborah Cragun2Robert F Dedrick3Crystal Y Lumpkins4Mariana Ramírez5Kimberly A Kaphingst6Ian M MacFarlane7Krista Redlinger-Grosse8Abdirashid Shire9Kathleen A Culhane-Pera10Heather A Zierhut117 University of Minnesota School of Public Health, Minneapolis, Minnesota, USA1Department of Neurology, Washington University School of Medicine, St Louis, Missouri, USA2 University of South Florida College of Public Health, Tampa, Florida, USA3 Educational and Psychological Studies, University of South Florida, Tampa, Florida, USA4 Huntsman Cancer Institute, Salt Lake City, Utah, USA6 JUNTOS Center for Advancing Latino Health, University of Kansas Medical Center Department of Population Health, Kansas City, Kansas, USA4 Huntsman Cancer Institute, Salt Lake City, Utah, USA1 Genetics, Cell Biology, and Development, University of Minnesota College of Biological Sciences, Minneapolis, Minnesota, USA1 Genetics, Cell Biology, and Development, University of Minnesota College of Biological Sciences, Minneapolis, Minnesota, USA8 Shire Scientific, LLC, Minneapolis, Minnesota, USA9 SoLaHmo Partnership for Health and Wellness, Community-University Health Care Center, Minneapolis, Minnesota, USA1 Genetics, Cell Biology, and Development, University of Minnesota College of Biological Sciences, Minneapolis, Minnesota, USAIntroduction In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA. Our community-engagement and provider-engagement approach is crucial to develop recommendations for quality, culturally informed GC care, which are greatly needed to improve GC practice.Methods and analysis A mixed methods, sequential explanatory design will be used to collect and analyze: audio-recorded GC sessions in cancer, cardiac, and prenatal/reproductive genetic indications; pre-visit and post-visit quantitative surveys capturing patient experiences and outcomes and post-visit qualitative interview data. A novel, practical checklist will measure GC communication skills. Coincidence analysis will identify patterns of GC skills that are consistent with high scores on patient-reported measures. Two-level, multilevel models will be used to evaluate how GC communication skills and other session/patient characteristics predict patient-reported outcomes. Four community advisory boards (CABs) and a genetic counselor advisory board will inform the study design and analysis.Ethics and dissemination This study has been approved by the single Institutional Review Board of the University of Minnesota. This research poses no greater than minimal risk to participants. Results from this study will be shared through national and international conferences and through community-based dissemination as guided by the study’s CABs. A lay summary will also be disseminated to all participants.https://bmjopen.bmj.com/content/14/4/e085472.full |
| spellingShingle | Ashley Petersen Elena R Fisher Deborah Cragun Robert F Dedrick Crystal Y Lumpkins Mariana Ramírez Kimberly A Kaphingst Ian M MacFarlane Krista Redlinger-Grosse Abdirashid Shire Kathleen A Culhane-Pera Heather A Zierhut Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study BMJ Open |
| title | Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study |
| title_full | Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study |
| title_fullStr | Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study |
| title_full_unstemmed | Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study |
| title_short | Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study |
| title_sort | linking genetic counseling communication skills to patient outcomes and experiences using a community engagement and provider engagement approach research protocol for the gc pro mixed methods sequential explanatory study |
| url | https://bmjopen.bmj.com/content/14/4/e085472.full |
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