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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.
Scollon, Sarah; Robinson, Jill O; Jo, Eunji; Suckiel, Sabrina A; Amendola, Laura M; Foreman, Ann Katherine M; Jarvik, Gail P; Rini, Christine; Wang, Tao; Slavotinek, Anne.
Afiliação
  • Scollon S; Department of Pediatrics, Baylor College of Medicine, Houston, TX. Electronic address: sxscollo@texaschildrens.org.
  • Robinson JO; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
  • Jo E; Dan L Duncan Comprehensive Cancer Center, Baylor College of Medicine, Houston, TX.
  • Suckiel SA; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY.
  • Amendola LM; Medical Genomics Research, Illumina Inc., San Diego, CA.
  • Foreman AKM; Department of Genetics, University of North Carolina at Chapel Hill, Chapel Hill, NC.
  • Jarvik GP; University of Washington Medical Center, Departments of Medicine (Medical Genetics) and Genome Sciences, Seattle, WA.
  • Rini C; Northwestern University Feinberg School of Medicine and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL.
  • Wang T; Dan L Duncan Comprehensive Cancer Center, Baylor College of Medicine, Houston, TX.
  • Slavotinek A; Department of Pediatrics, University of California, San Francisco, San Francisco, CA; Division of Human Genetics, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH; University of Cincinnati College of Medicine, Cincinnati, OH.
Genet Med ; 26(9): 101176, 2024 Sep.
Article em En | MEDLINE | ID: mdl-38832564
ABSTRACT

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.

CONCLUSION:

TM is an acceptable mode of return of results delivery across diverse settings and populations. Research optimizing approaches for underrepresented populations, populations with lower levels of education and health literacy, and multilingual populations is necessary.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Testes Genéticos Idioma: En Ano de publicação: 2024 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Testes Genéticos Idioma: En Ano de publicação: 2024 Tipo de documento: Article