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A randomized controlled trial of an online health tool about Down syndrome.
Chung, Jeanhee; Donelan, Karen; Macklin, Eric A; Schwartz, Alison; Elsharkawi, Ibrahim; Torres, Amy; Hsieh, Yichuan Grace; Parker, Holly; Lorenz, Stephen; Patsiogiannis, Vasiliki; Santoro, Stephanie L; Wylie, Mark; Clarke, Lloyd; Estey, Greg; Baker, Sandra; Bauer, Patricia E; Bull, Marilyn; Chicoine, Brian; Cullen, Sarah; Frey-Vogel, Ariel; Gallagher, Maureen; Hasan, Reem; Lamb, Ashley; Majewski, Lisa; Mast, Jawanda; Riddell, Travis; Sepucha, Karen; Skavlem, Melissa; Skotko, Brian G.
Afiliación
  • Chung J; Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
  • Donelan K; Department of Medicine, Harvard Medical School, Boston, MA, USA.
  • Macklin EA; Department of Medicine, Harvard Medical School, Boston, MA, USA.
  • Schwartz A; Health Policy Research Center, Mongan Institute, Massachusetts General Hospital, Boston, MA, USA.
  • Elsharkawi I; Biostatistics Center, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.
  • Torres A; Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
  • Hsieh YG; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
  • Parker H; Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
  • Lorenz S; Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
  • Patsiogiannis V; Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
  • Santoro SL; Department of Medicine, Harvard Medical School, Boston, MA, USA.
  • Wylie M; Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
  • Clarke L; Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
  • Estey G; Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
  • Baker S; Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
  • Bauer PE; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
  • Bull M; Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
  • Chicoine B; Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
  • Cullen S; Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
  • Frey-Vogel A; Down Syndrome Association of Los Angeles, Los Angeles, CA, USA.
  • Gallagher M; Trustee, The Riverview School, East Sandwich, MA, USA.
  • Hasan R; Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA.
  • Lamb A; Advocate Medical Group Adult Down Syndrome Center, Park Ridge, IL, USA.
  • Majewski L; Massachusetts Down Syndrome Congress, Boston, MA, USA.
  • Mast J; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
  • Riddell T; Massachusetts Down Syndrome Congress, Boston, MA, USA.
  • Sepucha K; Department of Internal Medicine and Pediatrics, Oregon Health & Science University, Portland, OR, USA.
  • Skavlem M; Health and Wellness, University of New Hampshire, Durham, NH, USA.
Genet Med ; 23(1): 163-173, 2021 01.
Article en En | MEDLINE | ID: mdl-32879436
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.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Síndrome de Down Tipo de estudio: Clinical_trials / Diagnostic_studies / Guideline Límite: Child / Humans Idioma: En Revista: Genet Med Asunto de la revista: GENETICA MEDICA Año: 2021 Tipo del documento: Article País de afiliación: Estados Unidos
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Síndrome de Down Tipo de estudio: Clinical_trials / Diagnostic_studies / Guideline Límite: Child / Humans Idioma: En Revista: Genet Med Asunto de la revista: GENETICA MEDICA Año: 2021 Tipo del documento: Article País de afiliación: Estados Unidos