Published on in Vol 10, No 5 (2021): May

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/27650, first published .
Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial

Anna M Hood   1 , BA, MA, PhD ;   Heather Strong   2 , PhD ;   Cara Nwankwo   3 , BA ;   Yolanda Johnson   2 , MS ;   James Peugh   2 , PhD ;   Constance A Mara   2 , PhD ;   Lisa M Shook   4, 5 , DHPE, MCHES ;   William B Brinkman   4, 6 , MD ;   Francis J Real   4, 6 , MD ;   Melissa D Klein   4, 6 , MD ;   Rogelle Hackworth   7 , BS ;   Sherif M Badawy   8, 9 , MD ;   Alexis A Thompson   8, 9 , MD ;   Jean L Raphael   10 , MD ;   Amber M Yates   11 , MD ;   Kim Smith-Whitley   12, 13 , MD ;   Allison A King   14, 15 , MD ;   Cecelia Calhoun   15 , MD ;   Susan E Creary   16 , MD ;   Connie M Piccone   17 , MD ;   Aimee K Hildenbrand   18, 19 , PhD ;   Steven K Reader   18, 19 , PhD ;   Lynne Neumayr   20, 21, 22 , MD ;   Emily R Meier   23 , MD ;   Amy E Sobota   24 , MD ;   Sohail Rana   25 , MD ;   Maria Britto   4, 26, 27 , MD ;   Kay L Saving   28 , MD ;   Marsha Treadwell   29 , PhD ;   Charles T Quinn   4, 30 , MD ;   Russell E Ware   4, 5 , MD ;   Lori E Crosby   2, 4, 27 , PsyD

1 Developmental Neurosciences, Institute of Child Health, University College London, London, United Kingdom

2 Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States

3 Department of Psychology, Oklahoma State University, Stillwater, OK, United States

4 Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, United States

5 Division of Hematology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States

6 Division of General and Community Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, United States

7 Cincinnati Children's Hospital Medical Center Partner, Cincinnati, OH, United States

8 Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States

9 Division of Hematology, Oncology and Stem Cell Transplant, Ann & Robert Lurie Children's Hospital of Chicago, Chicago, IL, United States

10 Center for Child Health Policy and Advocacy, Baylor College of Medicine, Houston, TX, United States

11 Department of Pediatrics, Division of Hematology/Oncology, Baylor College of Medicine, Houston, TX, United States

12 Children’s Hospital of Philadelphia, Philadelphia, PA, United States

13 Perelman School of Medicine, Philadelphia, PA, United States

14 Program in Occupational Therapy and Pediatrics, Division of Hematology and Oncology, Washington University School of Medicine and St. Louis Children’s Hospital, St. Louis, MO, United States

15 Division of Pediatric Hematology/Oncology, Washington University School of Medicine, St. Louis, MO, United States

16 Center for Innovation in Pediatric Practice, Division of Pediatric Hematology/Oncology/BMT, Nationwide Children's Hospital, Columbus, OH, United States

17 University Hospitals Rainbow Babies and Children's Hospital, Cleveland, OH, United States

18 Center for Healthcare Delivery Science, Nemours Children’s Health System, Wilmington, DE, United States

19 Division of Behavioral Health, Nemours/ Alfred I. duPont Hospital for Children, Wilmington, DE, United States

20 Department of Hematology/Oncology, Children's Hospital Oakland, Oakland, CA, United States

21 AbbVie, North Chicago, IL, United States

22 University of California San Francisco, San Francisco, CA, United States

23 Pediatrics, Pediatric Hematology/Oncology, Indiana Hemophilia and Thrombosis Center, Indianapolis, IN, United States

24 Pediatric Hematology and Oncology, Boston Medical Center, Boston, MA, United States

25 Pediatrics and Child Health, College of Medicine, Howard University, Washington, DC, United States

26 Adolescent and Transition Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, United States

27 James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, United States

28 Department of Pediatrics, University of Illinois College of Medicine, Peoria, IL, United States

29 Department of Hematology/Oncology, University of California San Francisco Benioff Children’s Hospital, Oakland, CA, United States

30 Cancer and Blood Diseases Institute, Division of Hematology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, United States

Corresponding Author:

  • Anna M Hood, BA, MA, PhD
  • Developmental Neurosciences
  • Institute of Child Health
  • University College London
  • 30 Guilford Street
  • London, WC1N 1EH
  • United Kingdom
  • Phone: 44 02079052744
  • Email: a.hood@ucl.ac.uk