The role of digital tools in the delivery of genomic medicine: enhancing patient-centered care.


Journal

Genetics in medicine : official journal of the American College of Medical Genetics
ISSN: 1530-0366
Titre abrégé: Genet Med
Pays: United States
ID NLM: 9815831

Informations de publication

Date de publication:
06 2021
Historique:
received: 30 10 2020
accepted: 27 01 2021
revised: 27 01 2021
pubmed: 4 3 2021
medline: 8 7 2021
entrez: 3 3 2021
Statut: ppublish

Résumé

Alternative models of genetic counseling are needed to meet the rising demand for genomic sequencing. Digital tools have been proposed as a method to augment traditional counseling and reduce burden on professionals; however, their role in delivery of genetic counseling is not established. This study explored the role of the Genomics ADvISER, a digital decision aid, in delivery of genomic counseling. We performed secondary analysis of 52 pretest genetic counseling sessions that were conducted over the course of a randomized controlled trial evaluating the effectiveness of the Genomics ADvISER. As part of the trial, participants were randomized to receive standard counseling or use the tool and then speak with a counselor. A qualitative interpretive description approach using thematic analysis and constant comparison was used for analysis. In the delivery of genomic counseling, the Genomics ADvISER contributed to enhancing counseling by (1) promoting informed dialogue, (2) facilitating preference-sensitive deliberation, and (3) deepening personalization of decisions, all of which represent fundamental principles of patient-centered care: providing clear high-quality information, respecting patients' values, preferences, and expressed needs, and providing emotional support. This study demonstrates that our digital tool contributed to enhancing patient-centered care in the delivery of genomic counseling.

Identifiants

pubmed: 33654192
doi: 10.1038/s41436-021-01112-1
pii: S1098-3600(21)05222-9
pmc: PMC9306004
mid: NIHMS1819420
doi:

Types de publication

Journal Article Randomized Controlled Trial Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1086-1094

Subventions

Organisme : NCI NIH HHS
ID : P30 CA008748
Pays : United States
Organisme : CIHR
ID : GSD-425969
Pays : Canada
Organisme : CIHR
ID : GSD-164222
Pays : Canada

Investigateurs

Yvonne Bombard (Y)
Susan Armel (S)
Melyssa Aronson (M)
Nancy Baxter (N)
Kenneth Bond (K)
José-Mario Capo-Chichi (JM)
June C Carroll (JC)
Timothy Caulfield (T)
Tammy Clifford (T)
Iris Cohn (I)
Irfan Dhalla (I)
Craig C Earle (CC)
Mike Evans (M)
Emily Glogowski (E)
Tracy Graham (T)
Jada G Hamilton (JG)
Wanrudee Isaranuwatchai (W)
Monika Kastner (M)
Raymond H Kim (RH)
Andreas Laupacis (A)
Chantal F Morel (CF)
Michelle Mujoomdar (M)
Kenneth Offit (K)
Mark E Robson (ME)
Adena Scheer (A)
Stephen W Scherer (SW)
Terrence Sullivan (T)
Kevin E Thorpe (KE)

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Auteurs

Salma Shickh (S)

Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.

Sara A Rafferty (SA)

Hospital for Sick Children, Toronto, ON, Canada.
Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada.

Marc Clausen (M)

St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.

Rita Kodida (R)

St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.

Chloe Mighton (C)

Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.

Seema Panchal (S)

Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada.

Justin Lorentz (J)

Sunnybrook Health Sciences Centre, Toronto, ON, Canada.

Thomas Ward (T)

Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada.

Nicholas Watkins (N)

Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada.

Christine Elser (C)

University Health Network, Toronto, ON, Canada.
Faculty of Medicine, University of Toronto, Toronto, ON, Canada.

Andrea Eisen (A)

Sunnybrook Health Sciences Centre, Toronto, ON, Canada.

June C Carroll (JC)

Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada.
Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.

Emily Glogowski (E)

GeneDx, Gaithersburg, MD, USA.

Kasmintan A Schrader (KA)

BC Cancer, Vancouver, BC, Canada.
Department of Medical Genetics, The University of British Columbia, Vancouver, BC, Canada.

Jordan Lerner-Ellis (J)

Lunenfeld Tanenbaum Research Institute, Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada.
Pathology and Laboratory Medicine, Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada.
Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, ON, Canada.

Raymond H Kim (RH)

Hospital for Sick Children, Toronto, ON, Canada.
University Health Network, Toronto, ON, Canada.
Faculty of Medicine, University of Toronto, Toronto, ON, Canada.

David Chitayat (D)

Hospital for Sick Children, Toronto, ON, Canada.
Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada.
Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada.

Cheryl Shuman (C)

Hospital for Sick Children, Toronto, ON, Canada.
Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada.

Yvonne Bombard (Y)

Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. yvonne.bombard@utoronto.ca.
St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada. yvonne.bombard@utoronto.ca.

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