A randomized controlled trial of an online health tool about Down syndrome

Jeanhee Chung; Karen Donelan; Eric A. Macklin; Alison Schwartz; Ibrahim Elsharkawi; Amy Torres; Yichuan Grace Hsieh; Holly Parker; Stephen Lorenz; Vasiliki Patsiogiannis; Stephanie L. Santoro; Mark Wylie; Lloyd Clarke; Greg Estey; Sandra Baker; Patricia E. Bauer; Marilyn Bull; Brian Chicoine; Sarah Cullen; Ariel Frey-Vogel; Maureen Gallagher; Reem Hasan; Ashley Lamb; Lisa Majewski; Jawanda Mast; Travis Riddell; Karen Sepucha; Melissa Skavlem; Brian G. Skotko

doi:10.1038/s41436-020-00952-7

A randomized controlled trial of an online health tool about Down syndrome

Jeanhee Chung, Karen Donelan, Eric A. Macklin, Alison Schwartz, Ibrahim Elsharkawi, Amy Torres, Yichuan Grace Hsieh, Holly Parker, Stephen Lorenz, Vasiliki Patsiogiannis, Stephanie L. Santoro, Mark Wylie, Lloyd Clarke, Greg Estey, Sandra Baker, Patricia E. Bauer, Marilyn Bull, Brian Chicoine, Sarah Cullen, Ariel Frey-VogelMaureen Gallagher, Reem Hasan, Ashley Lamb, Lisa Majewski, Jawanda Mast, Travis Riddell, Karen Sepucha, Melissa Skavlem, Brian G. Skotko

Department of Medicine

Research output: Contribution to journal › Article › peer-review

14 Scopus citations

Abstract

Purpose: We sought to determine if a novel online health tool, called Down Syndrome Clinic to You (DSC2U), could improve adherence to national Down syndrome (DS) guidelines. We also sought to determine if primary care providers (PCPs) and caregivers are satisfied with this personalized online health tool. Methods: In a national, randomized controlled trial of 230 caregivers who had children or dependents with DS without access to a DS specialist, 117 were randomized to receive DSC2U and 113 to receive usual care. The primary outcome was adherence to five health evaluations indicated by national guidelines for DS. DSC2U is completed electronically, in all mobile settings, by caregivers at home. The outputs—personalized checklists—are used during annual wellness visits with the patient’s PCP. Results: A total of 213 participants completed a 7-month follow-up evaluation. In the intention-to-treat analysis, the intervention group had a 1.6-fold increase in the number of indicated evaluations that were recommended by the primary care provider or completed compared with controls. Both caregivers and PCPs reported high levels of satisfaction with DSC2U. Conclusions: DSC2U improved adherence to the national DS health-care guidelines with a novel modality that was highly valued by both caregivers and PCPs.

Original language	English (US)
Pages (from-to)	163-173
Number of pages	11
Journal	Genetics in Medicine
Volume	23
Issue number	1
DOIs	https://doi.org/10.1038/s41436-020-00952-7
State	Published - Jan 2021

Keywords

Down syndrome
digital health
health-care guidelines
primary care
trisomy 21

ASJC Scopus subject areas

Genetics(clinical)

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10.1038/s41436-020-00952-7

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Chung, J., Donelan, K., Macklin, E. A., Schwartz, A., Elsharkawi, I., Torres, A., Hsieh, Y. G., Parker, H., Lorenz, S., Patsiogiannis, V., Santoro, S. L., Wylie, M., Clarke, L., Estey, G., Baker, S., Bauer, P. E., Bull, M., Chicoine, B., Cullen, S., ... Skotko, B. G. (2021). A randomized controlled trial of an online health tool about Down syndrome. Genetics in Medicine, 23(1), 163-173. https://doi.org/10.1038/s41436-020-00952-7

Chung, J, Donelan, K, Macklin, EA, Schwartz, A, Elsharkawi, I, Torres, A, Hsieh, YG, Parker, H, Lorenz, S, Patsiogiannis, V, Santoro, SL, Wylie, M, Clarke, L, Estey, G, Baker, S, Bauer, PE, Bull, M, Chicoine, B, Cullen, S, Frey-Vogel, A, Gallagher, M, Hasan, R, Lamb, A, Majewski, L, Mast, J, Riddell, T, Sepucha, K, Skavlem, M & Skotko, BG 2021, 'A randomized controlled trial of an online health tool about Down syndrome', Genetics in Medicine, vol. 23, no. 1, pp. 163-173. https://doi.org/10.1038/s41436-020-00952-7

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abstract = "Purpose: We sought to determine if a novel online health tool, called Down Syndrome Clinic to You (DSC2U), could improve adherence to national Down syndrome (DS) guidelines. We also sought to determine if primary care providers (PCPs) and caregivers are satisfied with this personalized online health tool. Methods: In a national, randomized controlled trial of 230 caregivers who had children or dependents with DS without access to a DS specialist, 117 were randomized to receive DSC2U and 113 to receive usual care. The primary outcome was adherence to five health evaluations indicated by national guidelines for DS. DSC2U is completed electronically, in all mobile settings, by caregivers at home. The outputs—personalized checklists—are used during annual wellness visits with the patient{\textquoteright}s PCP. Results: A total of 213 participants completed a 7-month follow-up evaluation. In the intention-to-treat analysis, the intervention group had a 1.6-fold increase in the number of indicated evaluations that were recommended by the primary care provider or completed compared with controls. Both caregivers and PCPs reported high levels of satisfaction with DSC2U. Conclusions: DSC2U improved adherence to the national DS health-care guidelines with a novel modality that was highly valued by both caregivers and PCPs.",

keywords = "Down syndrome, digital health, health-care guidelines, primary care, trisomy 21",

author = "Jeanhee Chung and Karen Donelan and Macklin, {Eric A.} and Alison Schwartz and Ibrahim Elsharkawi and Amy Torres and Hsieh, {Yichuan Grace} and Holly Parker and Stephen Lorenz and Vasiliki Patsiogiannis and Santoro, {Stephanie L.} and Mark Wylie and Lloyd Clarke and Greg Estey and Sandra Baker and Bauer, {Patricia E.} and Marilyn Bull and Brian Chicoine and Sarah Cullen and Ariel Frey-Vogel and Maureen Gallagher and Reem Hasan and Ashley Lamb and Lisa Majewski and Jawanda Mast and Travis Riddell and Karen Sepucha and Melissa Skavlem and Skotko, {Brian G.}",

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doi = "10.1038/s41436-020-00952-7",

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AU - Chung, Jeanhee

AU - Donelan, Karen

AU - Macklin, Eric A.

AU - Schwartz, Alison

AU - Elsharkawi, Ibrahim

AU - Torres, Amy

AU - Hsieh, Yichuan Grace

AU - Parker, Holly

AU - Lorenz, Stephen

AU - Patsiogiannis, Vasiliki

AU - Santoro, Stephanie L.

AU - Wylie, Mark

AU - Clarke, Lloyd

AU - Estey, Greg

AU - Baker, Sandra

AU - Bauer, Patricia E.

AU - Bull, Marilyn

AU - Chicoine, Brian

AU - Cullen, Sarah

AU - Frey-Vogel, Ariel

AU - Gallagher, Maureen

AU - Hasan, Reem

AU - Lamb, Ashley

AU - Majewski, Lisa

AU - Mast, Jawanda

AU - Riddell, Travis

AU - Sepucha, Karen

AU - Skavlem, Melissa

AU - Skotko, Brian G.

PY - 2021/1

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N2 - Purpose: We sought to determine if a novel online health tool, called Down Syndrome Clinic to You (DSC2U), could improve adherence to national Down syndrome (DS) guidelines. We also sought to determine if primary care providers (PCPs) and caregivers are satisfied with this personalized online health tool. Methods: In a national, randomized controlled trial of 230 caregivers who had children or dependents with DS without access to a DS specialist, 117 were randomized to receive DSC2U and 113 to receive usual care. The primary outcome was adherence to five health evaluations indicated by national guidelines for DS. DSC2U is completed electronically, in all mobile settings, by caregivers at home. The outputs—personalized checklists—are used during annual wellness visits with the patient’s PCP. Results: A total of 213 participants completed a 7-month follow-up evaluation. In the intention-to-treat analysis, the intervention group had a 1.6-fold increase in the number of indicated evaluations that were recommended by the primary care provider or completed compared with controls. Both caregivers and PCPs reported high levels of satisfaction with DSC2U. Conclusions: DSC2U improved adherence to the national DS health-care guidelines with a novel modality that was highly valued by both caregivers and PCPs.

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KW - digital health

KW - health-care guidelines

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KW - trisomy 21

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A randomized controlled trial of an online health tool about Down syndrome

Abstract

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