Investigating the Impact of Screen-Sharing Visual Aids during Genomic Results Disclosure via Telehealth in Diverse Families in the TeleKidSeq Pilot Study

Introduction: Telehealth genetic counseling is comparable to in-person visits in terms of satisfaction, knowledge, and psychological outcomes, but using visual aids can be challenging on telehealth platforms. This pilot study assessed if the “screen-sharing” feature via Zoom to display vi...

Full description

Saved in:
Bibliographic Details
Main Authors: Jacqueline A. Odgis, Nicole R. Kelly, Monisha Sebastin, Laura Golfinopoulos, Beverly J. Insel, Sabrina A. Suckiel, Katherine E. Bonini, Priya N. Marathe, Miranda Di Biase, Kaitlyn Brown, Katie M. Gallagher, Michelle A. Ramos, Jessica E. Rodriguez, Nicole Yelton, Karla López Aguiñiga, Michelle A. Rodriguez, Estefany María, Jessenia Lopez, Randi E. Zinberg, George A. Diaz, John M. Greally, Noura S. Abul-Husn, Laurie J. Bauman, Bruce D. Gelb, Carol R. Horowitz, Eimear E. Kenny, Melissa P. Wasserstein
Format: Article
Language:English
Published: Karger Publishers 2025-01-01
Series:Public Health Genomics
Online Access:https://karger.com/article/doi/10.1159/000542444
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1850274734260879360
author Jacqueline A. Odgis
Nicole R. Kelly
Monisha Sebastin
Laura Golfinopoulos
Beverly J. Insel
Sabrina A. Suckiel
Katherine E. Bonini
Priya N. Marathe
Miranda Di Biase
Kaitlyn Brown
Katie M. Gallagher
Michelle A. Ramos
Jessica E. Rodriguez
Nicole Yelton
Karla López Aguiñiga
Michelle A. Rodriguez
Estefany María
Jessenia Lopez
Randi E. Zinberg
George A. Diaz
John M. Greally
Noura S. Abul-Husn
Laurie J. Bauman
Bruce D. Gelb
Carol R. Horowitz
Eimear E. Kenny
Melissa P. Wasserstein
author_facet Jacqueline A. Odgis
Nicole R. Kelly
Monisha Sebastin
Laura Golfinopoulos
Beverly J. Insel
Sabrina A. Suckiel
Katherine E. Bonini
Priya N. Marathe
Miranda Di Biase
Kaitlyn Brown
Katie M. Gallagher
Michelle A. Ramos
Jessica E. Rodriguez
Nicole Yelton
Karla López Aguiñiga
Michelle A. Rodriguez
Estefany María
Jessenia Lopez
Randi E. Zinberg
George A. Diaz
John M. Greally
Noura S. Abul-Husn
Laurie J. Bauman
Bruce D. Gelb
Carol R. Horowitz
Eimear E. Kenny
Melissa P. Wasserstein
author_sort Jacqueline A. Odgis
collection DOAJ
description Introduction: Telehealth genetic counseling is comparable to in-person visits in terms of satisfaction, knowledge, and psychological outcomes, but using visual aids can be challenging on telehealth platforms. This pilot study assessed if the “screen-sharing” feature via Zoom to display visual aids during results disclosure sessions positively impacted parental experience and comprehension of their child’s genomic results, especially in underrepresented groups and those with limited English proficiency. Methods: In the TeleKidSeq pilot study, 409 children with suspected genetic conditions underwent genome sequencing. Families were randomized to receive genomic results via televisits with (ScrS) or without (NScrS) screen-sharing of visual aids. Spanish- or English-speaking parents/legal guardians completed surveys at three time points to assess perceived and objective understanding, perceived confidence, and telehealth experience. Regression models evaluated the effect of screen-sharing over time. Results: Overall, understanding and telehealth experience ratings were high, with no significant differences between the ScrS (N = 192) and NScrS (N = 200) arms with regard to perceived (p = 0.32) or objective (p = 0.94) understanding, confidence (p = 0.14) over time, or telehealth experience (p = 0.10). When stratifying by sociodemographic characteristics and type of device used during results disclosure, we observed subtle differences in the effect of screen-sharing within some subgroups. Conclusion: While screen-sharing had no significant impact on overall outcomes, we identified modest effects of screen-sharing within population groups that highlight the need for tailored communication strategies to ensure diverse, multilingual communities derive equitable benefit from telehealth-based genomic results disclosure. Future research is needed to determine whether certain types of visual aids best enhance genomic results disclosure in larger, more robust studies designed to detect smaller effects and subgroup differences.
format Article
id doaj-art-d13e1c0b35cc4eb5903cc197f69bc751
institution OA Journals
issn 1662-8063
language English
publishDate 2025-01-01
publisher Karger Publishers
record_format Article
series Public Health Genomics
spelling doaj-art-d13e1c0b35cc4eb5903cc197f69bc7512025-08-20T01:51:03ZengKarger PublishersPublic Health Genomics1662-80632025-01-012818510110.1159/000542444Investigating the Impact of Screen-Sharing Visual Aids during Genomic Results Disclosure via Telehealth in Diverse Families in the TeleKidSeq Pilot StudyJacqueline A. OdgisNicole R. KellyMonisha SebastinLaura GolfinopoulosBeverly J. InselSabrina A. Suckielhttps://orcid.org/0000-0003-3333-7526Katherine E. BoniniPriya N. MaratheMiranda Di BiaseKaitlyn BrownKatie M. GallagherMichelle A. RamosJessica E. RodriguezNicole YeltonKarla López AguiñigaMichelle A. RodriguezEstefany MaríaJessenia LopezRandi E. ZinbergGeorge A. DiazJohn M. GreallyNoura S. Abul-HusnLaurie J. BaumanBruce D. GelbCarol R. HorowitzEimear E. KennyMelissa P. Wasserstein Introduction: Telehealth genetic counseling is comparable to in-person visits in terms of satisfaction, knowledge, and psychological outcomes, but using visual aids can be challenging on telehealth platforms. This pilot study assessed if the “screen-sharing” feature via Zoom to display visual aids during results disclosure sessions positively impacted parental experience and comprehension of their child’s genomic results, especially in underrepresented groups and those with limited English proficiency. Methods: In the TeleKidSeq pilot study, 409 children with suspected genetic conditions underwent genome sequencing. Families were randomized to receive genomic results via televisits with (ScrS) or without (NScrS) screen-sharing of visual aids. Spanish- or English-speaking parents/legal guardians completed surveys at three time points to assess perceived and objective understanding, perceived confidence, and telehealth experience. Regression models evaluated the effect of screen-sharing over time. Results: Overall, understanding and telehealth experience ratings were high, with no significant differences between the ScrS (N = 192) and NScrS (N = 200) arms with regard to perceived (p = 0.32) or objective (p = 0.94) understanding, confidence (p = 0.14) over time, or telehealth experience (p = 0.10). When stratifying by sociodemographic characteristics and type of device used during results disclosure, we observed subtle differences in the effect of screen-sharing within some subgroups. Conclusion: While screen-sharing had no significant impact on overall outcomes, we identified modest effects of screen-sharing within population groups that highlight the need for tailored communication strategies to ensure diverse, multilingual communities derive equitable benefit from telehealth-based genomic results disclosure. Future research is needed to determine whether certain types of visual aids best enhance genomic results disclosure in larger, more robust studies designed to detect smaller effects and subgroup differences. https://karger.com/article/doi/10.1159/000542444
spellingShingle Jacqueline A. Odgis
Nicole R. Kelly
Monisha Sebastin
Laura Golfinopoulos
Beverly J. Insel
Sabrina A. Suckiel
Katherine E. Bonini
Priya N. Marathe
Miranda Di Biase
Kaitlyn Brown
Katie M. Gallagher
Michelle A. Ramos
Jessica E. Rodriguez
Nicole Yelton
Karla López Aguiñiga
Michelle A. Rodriguez
Estefany María
Jessenia Lopez
Randi E. Zinberg
George A. Diaz
John M. Greally
Noura S. Abul-Husn
Laurie J. Bauman
Bruce D. Gelb
Carol R. Horowitz
Eimear E. Kenny
Melissa P. Wasserstein
Investigating the Impact of Screen-Sharing Visual Aids during Genomic Results Disclosure via Telehealth in Diverse Families in the TeleKidSeq Pilot Study
Public Health Genomics
title Investigating the Impact of Screen-Sharing Visual Aids during Genomic Results Disclosure via Telehealth in Diverse Families in the TeleKidSeq Pilot Study
title_full Investigating the Impact of Screen-Sharing Visual Aids during Genomic Results Disclosure via Telehealth in Diverse Families in the TeleKidSeq Pilot Study
title_fullStr Investigating the Impact of Screen-Sharing Visual Aids during Genomic Results Disclosure via Telehealth in Diverse Families in the TeleKidSeq Pilot Study
title_full_unstemmed Investigating the Impact of Screen-Sharing Visual Aids during Genomic Results Disclosure via Telehealth in Diverse Families in the TeleKidSeq Pilot Study
title_short Investigating the Impact of Screen-Sharing Visual Aids during Genomic Results Disclosure via Telehealth in Diverse Families in the TeleKidSeq Pilot Study
title_sort investigating the impact of screen sharing visual aids during genomic results disclosure via telehealth in diverse families in the telekidseq pilot study
url https://karger.com/article/doi/10.1159/000542444
work_keys_str_mv AT jacquelineaodgis investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT nicolerkelly investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT monishasebastin investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT lauragolfinopoulos investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT beverlyjinsel investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT sabrinaasuckiel investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT katherineebonini investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT priyanmarathe investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT mirandadibiase investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT kaitlynbrown investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT katiemgallagher investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT michellearamos investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT jessicaerodriguez investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT nicoleyelton investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT karlalopezaguiniga investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT michellearodriguez investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT estefanymaria investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT jessenialopez investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT randiezinberg investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT georgeadiaz investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT johnmgreally investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT nourasabulhusn investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT lauriejbauman investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT brucedgelb investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT carolrhorowitz investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT eimearekenny investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy
AT melissapwasserstein investigatingtheimpactofscreensharingvisualaidsduringgenomicresultsdisclosureviatelehealthindiversefamiliesinthetelekidseqpilotstudy