ARTICLE Satisfaction with mode of delivery of genomic sequencing results in a diverse national sample of research participants through the Clinical Sequencing Evidence-Generating Research Consortium

被引:0
作者
Scollon, Sarah [1 ]
Robinson, Jill O. [2 ]
Jo, Eunji [3 ]
Suckiel, Sabrina A. [4 ]
Amendola, Laura M. [5 ]
Foreman, Ann Katherine M. [6 ]
Jarvik, Gail P. [7 ,8 ]
Rini, Christine [9 ,10 ]
Wang, Tao [3 ]
Slavotinek, Anne [11 ,12 ,13 ]
机构
[1] Baylor Coll Med, Dept Pediat, Houston, TX USA
[2] Baylor Coll Med, Ctr Med Eth & Hlth Policy, Houston, TX USA
[3] Baylor Coll Med, Dan L Duncan Comprehens Canc Ctr, Houston, TX USA
[4] Icahn Sch Med Mt Sinai, Inst Genom Hlth, New York, NY USA
[5] Illumina Inc, Med Genom Res, San Diego, CA USA
[6] Univ North Carolina Chapel Hill, Dept Genet, Chapel Hill, NC USA
[7] Univ Washington Med Ctr, Dept Med, Seattle, WA USA
[8] Univ Washington Med Ctr, Dept Med Genet & Genome Sci, Seattle, WA USA
[9] Northwestern Univ, Feinberg Sch Med, Chicago, IL USA
[10] Northwestern Univ, Robert H Lurie Comprehens Canc Ctr, Chicago, IL USA
[11] Univ Calif San Francisco, Dept Pediat, San Francisco, CA USA
[12] Cincinnati Childrens Hosp Med Ctr, Dept Pediat, Div Human Genet, Cincinnati, OH USA
[13] Univ Cincinnati, Coll Med, Cincinnati, OH USA
关键词
Clinical genetics; Genetic counseling; Genomics; Service delivery models; Telegenetics; SPANISH INTERPRETATION;
D O I
10.1016/j.gim.2024.101176
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
Purpose: Research that includes diverse patient populations is necessary to optimize implementation of telehealth. Methods: As part of a Clinical Sequencing Evidence-Generating Research Consortium cross-site study, we assessed satisfaction with mode of return of results (RoR) delivery across a diverse sample of participants receiving genetic testing results in person vs telemedicine (TM). Results: Ninety-eight percent of participants were satisfied with their mode of results delivery. Participants receiving results by TM were more likely to report a preference for receiving results in a different way and challenges with providers noticing difficulties with understanding. More than 90% reported satisfaction across all items measuring support and interaction during sessions. Participants self-reporting Hispanic/Latino or Black/African American race and ethnicity compared with White/European American, fewer years of education, and having lower health literacy were more likely to report challenges with understanding the information or asking questions. Participants who were White/European American, had more years of education, and higher health literacy reported higher communication scores, reflecting more positive evaluations of the communication experience.
引用
收藏
页数:11
相关论文
共 30 条
  • [1] The Global State of the Genetic Counseling Profession
    Abacan, MaryAnn
    Alsubaie, Lamia
    Barlow-Stewart, Kristine
    Caanen, Beppy
    Cordier, Christophe
    Courtney, Eliza
    Davoine, Emeline
    Edwards, Janice
    Elackatt, Niby J.
    Gardiner, Kate
    Guan, Yue
    Huang, Lian-Hua
    Malmgren, Charlotta Ingvoldstad
    Kejriwal, Sahil
    Kim, Hyon J.
    Lambert, Deborah
    Lantigua-Cruz, Paulina Araceli
    Lee, Juliana M. H.
    Lodahl, Marianne
    Lunde, Ashild
    Macaulay, Shelley
    Macciocca, Ivan
    Margarit, Sonia
    Middleton, Anna
    Moldovan, Ramona
    Ngeow, Joanne
    Obregon-Tito, Alexandra J.
    Ormond, Kelly E.
    Paneque, Milena
    Powell, Karen
    Sanghavi, Kunal
    Scotcher, Diana
    Scott, Jenna
    Juhe, Clara Serra
    Shkedi-Rafid, Shiri
    Wessels, Tina-Marie
    Yoon, Sook-Yee
    Wicklund, Catherine
    [J]. EUROPEAN JOURNAL OF HUMAN GENETICS, 2019, 27 (02) : 183 - 197
  • [2] The Clinical Sequencing Evidence-Generating Research Consortium: Integrating Genomic Sequencing in Diverse and Medically Underserved Populations
    Amendola, Laura M.
    Berg, Jonathan S.
    Horowitz, Carol R.
    Angelo, Frank
    Bensen, Jeannette T.
    Biesecker, Barbara B.
    Biesecker, Leslie G.
    Cooper, Gregory M.
    East, Kelly
    Filipski, Kelly
    Fullerton, Stephanie M.
    Gelb, Bruce D.
    Goddard, Katrina A. B.
    Hailu, Benyam
    Hart, Ragan
    Hassmiller-Lich, Kristen
    Joseph, Galen
    Kenny, Eimear E.
    Koenig, Barbara A.
    Knight, Sara
    Kwok, Pui-Yan
    Lewis, Katie L.
    McGuire, Amy L.
    Norton, Mary E.
    Ou, Jeffrey
    Parsons, Donald W.
    Powell, Bradford C.
    Risch, Neil
    Robinson, Mimsie
    Rini, Christine
    Scollon, Sarah
    Slavotinek, Anne M.
    Veenstra, David L.
    Wasserstein, Melissa P.
    Wilfond, Benjamin S.
    Hindorff, Lucia A.
    Plon, Sharon E.
    Jarvik, Gail P.
    [J]. AMERICAN JOURNAL OF HUMAN GENETICS, 2018, 103 (03) : 319 - 327
  • [3] Genetics providers' experiences using telehealth: A grounded theory approach
    Beretich, Lauren A.
    Sarasua, Sara M.
    DeLuca, Jane M.
    [J]. JOURNAL OF GENETIC COUNSELING, 2022, 31 (05) : 1155 - 1163
  • [4] Chew LD, 2004, FAM MED, V36, P588
  • [5] Telehealth for genetic counseling: A systematic evidence review
    Danylchuk, Noelle R.
    Cook, Lola
    Shane-Carson, Kate P.
    Cacioppo, Cara N.
    Hardy, Melanie W.
    Nusbaum, Rachel
    Steelman, Susan C.
    Malinowski, Jennifer
    [J]. JOURNAL OF GENETIC COUNSELING, 2021, 30 (05) : 1361 - 1378
  • [6] Goddard Katrina A B, 2020, J Clin Transl Sci, V4, P537, DOI 10.1017/cts.2020.41
  • [7] Benefits and limitations of telegenetics: A literature review
    Gorrie, Anita
    Gold, Judy
    Cameron, Carolyn
    Krause, Molly
    Kincaid, Helen
    [J]. JOURNAL OF GENETIC COUNSELING, 2021, 30 (04) : 924 - 937
  • [8] Experiences of individuals with a variant of uncertain significance on genetic testing for hereditary cancer risks: a mixed method systematic review
    Gould, Danielle
    Walker, Rachel
    Makari-Judson, Grace
    Seven, Memnun
    [J]. JOURNAL OF COMMUNITY GENETICS, 2022, 13 (04) : 371 - 379
  • [9] An evidence-based practice guideline of the National Society of Genetic Counselors for telehealth genetic counseling
    Green, Sarah
    Hartzfeld, Deborah
    Terry, Alissa Bovee
    Fissell, Kristi
    Friedman, Sue
    Paolino, Nicholas
    Principe, Kate
    Sandbach, John
    Trzupek, Karmen
    Winheld, Stephanie
    Malinowski, Jennifer
    [J]. JOURNAL OF GENETIC COUNSELING, 2023, 32 (01) : 4 - 17
  • [10] Portero versus portador: Spanish interpretation of genomic terminology during whole exome sequencing results disclosure
    Gutierrez, Amanda M.
    Robinson, Jill O.
    Statham, Emily E.
    Scollon, Sarah
    Bergstrom, Katie L.
    Slashinski, Melody J.
    Parsons, Donald W.
    Plon, Sharon E.
    McGuire, Amy L.
    Street, Richard L.
    [J]. PERSONALIZED MEDICINE, 2017, 14 (06) : 503 - 514