Jeanhee Chung1,2, Karen Donelan2,3, Eric A Macklin4, Alison Schwartz5,6, Ibrahim Elsharkawi5, Amy Torres5, Yichuan Grace Hsieh1,2, Holly Parker1, Stephen Lorenz1, Vasiliki Patsiogiannis5, Stephanie L Santoro5,6, Mark Wylie1, Lloyd Clarke1, Greg Estey1, Sandra Baker7, Patricia E Bauer8, Marilyn Bull9, Brian Chicoine10, Sarah Cullen11, Ariel Frey-Vogel6, Maureen Gallagher11, Reem Hasan12, Ashley Lamb13, Lisa Majewski, Jawanda Mast, Travis Riddell14, Karen Sepucha15, Melissa Skavlem, Brian G Skotko16,17. 1. Laboratory of Computer Science, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA. 2. Department of Medicine, Harvard Medical School, Boston, MA, USA. 3. Health Policy Research Center, Mongan Institute, Massachusetts General Hospital, Boston, MA, USA. 4. Biostatistics Center, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA. 5. Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA. 6. Department of Pediatrics, Harvard Medical School, Boston, MA, USA. 7. Down Syndrome Association of Los Angeles, Los Angeles, CA, USA. 8. Trustee, The Riverview School, East Sandwich, MA, USA. 9. Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA. 10. Advocate Medical Group Adult Down Syndrome Center, Park Ridge, IL, USA. 11. Massachusetts Down Syndrome Congress, Boston, MA, USA. 12. Department of Internal Medicine and Pediatrics, Oregon Health & Science University, Portland, OR, USA. 13. Health and Wellness, University of New Hampshire, Durham, NH, USA. 14. Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA. 15. Health Decision Sciences Center, Massachusetts General Hospital, Boston, MA, USA. 16. Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA. bskotko@mgh.harvard.edu. 17. Department of Pediatrics, Harvard Medical School, Boston, MA, USA. bskotko@mgh.harvard.edu.
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.
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.
Entities:
Keywords:
Down syndrome; digital health; health-care guidelines; primary care; trisomy 21
Authors: James E Bailey; Cathy Gurgol; Eric Pan; Shirilyn Njie; Susan Emmett; Justin Gatwood; Lynne Gauthier; Lisa G Rosas; Shannon M Kearney; Samantha Kleindienst Robler; Raymona H Lawrence; Karen L Margolis; Ifeyinwa Osunkwo; Denise Wilfley; Vallabh O Shah Journal: J Med Internet Res Date: 2021-12-07 Impact factor: 5.428