A randomized controlled trial of an online health tool about Down syndrome.,Genetics in Medicine

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A randomized controlled trial of an online health tool about Down syndrome.
Genetics in Medicine ( IF 8.8 ) Pub Date : 2020-09-03 , DOI: 10.1038/s41436-020-00952-7
Jeanhee Chung _{1,

2} , Karen Donelan _{2,

3} , Eric A Macklin ₄ , Alison Schwartz _{5,

6} , Ibrahim Elsharkawi ₅ , Amy Torres ₅ , Yichuan Grace Hsieh _{1,

2} , Holly Parker ₁ , Stephen Lorenz ₁ , Vasiliki Patsiogiannis ₅ , Stephanie L Santoro _{5,

6} , Mark Wylie ₁ , Lloyd Clarke ₁ , Greg Estey ₁ , Sandra Baker ₇ , Patricia E Bauer ₈ , Marilyn Bull ₉ , Brian Chicoine ₁₀ , Sarah Cullen ₁₁ , Ariel Frey-Vogel ₆ , Maureen Gallagher ₁₁ , Reem Hasan ₁₂ , Ashley Lamb ₁₃ , Lisa Majewski , Jawanda Mast , Travis Riddell ₁₄ , Karen Sepucha ₁₅ , Melissa Skavlem , Brian G Skotko _{5,

6}

Affiliation

Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Department of Medicine, Harvard Medical School, Boston, MA, USA.
Health Policy Research Center, Mongan Institute, Massachusetts General Hospital, Boston, MA, USA.
Biostatistics Center, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.
Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
Down Syndrome Association of Los Angeles, Los Angeles, CA, USA.
Trustee, The Riverview School, East Sandwich, MA, USA.
Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA.
Advocate Medical Group Adult Down Syndrome Center, Park Ridge, IL, USA.
Massachusetts Down Syndrome Congress, Boston, MA, USA.
Department of Internal Medicine and Pediatrics, Oregon Health & Science University, Portland, OR, USA.
Health and Wellness, University of New Hampshire, Durham, NH, USA.
Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
Health Decision Sciences Center, Massachusetts General Hospital, Boston, MA, USA.

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.

中文翻译：

一项关于唐氏综合症的在线健康工具的随机对照试验。

目的

我们试图确定一种称为唐氏综合症诊所 (DSC2U) 的新型在线健康工具是否可以提高对国家唐氏综合症 (DS) 指南的依从性。我们还试图确定初级保健提供者 (PCP) 和护理人员是否对这种个性化的在线健康工具感到满意。

方法

在一项全国性的随机对照试验中，230 名儿童或家属患有 DS 且无法获得 DS 专家的照顾者，其中 117 名随机接受 DSC2U，113 名接受常规护理。主要结果是遵守国家 DS 指南指出的五项健康评估。DSC2U 由在家中的护理人员在所有移动环境中以电子方式完成。在与患者的 PCP 进行年度健康检查时会使用这些输出（个性化检查表）。