title: Consideration of Insulin Pumps or Continuous Glucose Monitors by Adolescents With Type 1 Diabetes and Their Parents: Stakeholder Engagement in the Design of Web-Based Decision Aids.
abstract: This article describes the stakeholder-driven design, development, and testing of web-based, multimedia decision aids for youth with type 1 diabetes who are considering the insulin pump or continuous glucose monitoring and their parents. This is the initial phase of work designed to develop and evaluate the efficacy of these decision aids in promoting improved decision-making engagement with use of a selected device.
  
  
  
  Qualitative interviews of 36 parents and adolescents who had previously faced these decisions and 12 health care providers defined the content, format and structure of the decision aids. Experts in children's health media helped the research team to plan, create, and refine multimedia content and its presentation. A web development firm helped organize the content into a user-friendly interface and enabled tracking of decision aid utilization. Throughout, members of the research team, adolescents, parents, and 3 expert consultants offered perspectives about the website content, structure, and function until the design was complete.
  
  
  
  With the decision aid websites completed, the next phase of the project is a randomized controlled trial of usual clinical practice alone or augmented by use of the decision aid websites.
  
  
  
  Stakeholder-driven development of multimedia, web-based decision aids requires meticulous attention to detail but can yield exceptional resources for adolescents and parents contemplating major changes to their diabetes regimens.
authors.affiliation: Center for Health Care Delivery Science, Nemours Children's Health System, Jacksonville, FL, and Wilmington, DE (Dr Wysocki, Ms Taylor, Ms Milkes, Ms Bejarano, Ms Kozikowski, Ms Christofferson)
authors.forename: Tim
authors.initials: T
authors.lastname: Wysocki
authors.affiliation: Nemours Center for Children's Health Media, Wilmington, DE (Ms Hirschfield, Dr Izenberg, Dr Dowshen, Ms Shinseki, Dr Lyness)
authors.forename: Fiona
authors.initials: F
authors.lastname: Hirschfeld
authors.affiliation: eCity Interactive, Inc, Philadelphia, PA (Mr Miller)
authors.forename: Louis
authors.initials: L
authors.lastname: Miller
authors.affiliation: Nemours Center for Children's Health Media, Wilmington, DE (Ms Hirschfield, Dr Izenberg, Dr Dowshen, Ms Shinseki, Dr Lyness)
authors.forename: Neil
authors.initials: N
authors.lastname: Izenberg
authors.affiliation: Nemours Center for Children's Health Media, Wilmington, DE (Ms Hirschfield, Dr Izenberg, Dr Dowshen, Ms Shinseki, Dr Lyness)
authors.forename: Steven A
authors.initials: SA
authors.lastname: Dowshen
authors.affiliation: Center for Health Care Delivery Science, Nemours Children's Health System, Jacksonville, FL, and Wilmington, DE (Dr Wysocki, Ms Taylor, Ms Milkes, Ms Bejarano, Ms Kozikowski, Ms Christofferson)
authors.forename: Alex
authors.initials: A
authors.lastname: Taylor
authors.affiliation: Center for Health Care Delivery Science, Nemours Children's Health System, Jacksonville, FL, and Wilmington, DE (Dr Wysocki, Ms Taylor, Ms Milkes, Ms Bejarano, Ms Kozikowski, Ms Christofferson)
authors.forename: Amy
authors.initials: A
authors.lastname: Milkes
authors.affiliation: Nemours Center for Children's Health Media, Wilmington, DE (Ms Hirschfield, Dr Izenberg, Dr Dowshen, Ms Shinseki, Dr Lyness)
authors.forename: Michelle T
authors.initials: MT
authors.lastname: Shinseki
authors.affiliation: Center for Health Care Delivery Science, Nemours Children's Health System, Jacksonville, FL, and Wilmington, DE (Dr Wysocki, Ms Taylor, Ms Milkes, Ms Bejarano, Ms Kozikowski, Ms Christofferson)
authors.forename: Carolina
authors.initials: C
authors.lastname: Bejarano
authors.affiliation: Center for Health Care Delivery Science, Nemours Children's Health System, Jacksonville, FL, and Wilmington, DE (Dr Wysocki, Ms Taylor, Ms Milkes, Ms Bejarano, Ms Kozikowski, Ms Christofferson)
authors.forename: Chelsea
authors.initials: C
authors.lastname: Kozikowski
authors.affiliation: Nemours-Jefferson Pediatrics, Philadelphia, PA (Ms Kowal, Dr Ross, Ms Rafalko)
authors.forename: Karen
authors.initials: K
authors.lastname: Kowal
authors.affiliation: Member of Family Advisory Council, Drexel Hill, PA (Ms Starr-Ashton)
authors.forename: Penny
authors.initials: P
authors.lastname: Starr-Ashton
authors.affiliation: Nemours-Jefferson Pediatrics, Philadelphia, PA (Ms Kowal, Dr Ross, Ms Rafalko)
authors.forename: Judith L
authors.initials: JL
authors.lastname: Ross
authors.affiliation: Nemours Children's Specialty Care, Pensacola, FL (Dr Kummer)
authors.forename: Mark
authors.initials: M
authors.lastname: Kummer
authors.affiliation: Nemours Children's Hospital, Orlando, FL (Dr Carakushansky, Dr Pierce)
authors.forename: Mauri
authors.initials: M
authors.lastname: Carakushansky
authors.affiliation: Nemours Center for Children's Health Media, Wilmington, DE (Ms Hirschfield, Dr Izenberg, Dr Dowshen, Ms Shinseki, Dr Lyness)
authors.forename: D'Arcy
authors.initials: D
authors.lastname: Lyness
authors.affiliation: Cincinnati Children's Hospital and Medical Center, Cincinnati, OH (Dr Brinkman)
authors.forename: William
authors.initials: W
authors.lastname: Brinkman
authors.affiliation: Nemours Children's Hospital, Orlando, FL (Dr Carakushansky, Dr Pierce)
authors.forename: Jessica
authors.initials: J
authors.lastname: Pierce
authors.affiliation: Children's Hospital of Philadelphia and University of Pennsylvania, Philadelphia, PA (Dr Fiks)
authors.forename: Alexander
authors.initials: A
authors.lastname: Fiks
authors.affiliation: Center for Health Care Delivery Science, Nemours Children's Health System, Jacksonville, FL, and Wilmington, DE (Dr Wysocki, Ms Taylor, Ms Milkes, Ms Bejarano, Ms Kozikowski, Ms Christofferson)
authors.forename: Jennifer
authors.initials: J
authors.lastname: Christofferson
authors.affiliation: Nemours-Jefferson Pediatrics, Philadelphia, PA (Ms Kowal, Dr Ross, Ms Rafalko)
authors.forename: Jessica
authors.initials: J
authors.lastname: Rafalko
authors.affiliation: Children's Hospital of Eastern Ontario, Ottawa, Ontario, CA (Dr Lawson)
authors.forename: Margaret L
authors.initials: ML
authors.lastname: Lawson
mesh_terms: D000293:Adolescent; D015190:Blood Glucose Self-Monitoring / Q000523:psychology*; D002648:Child; D003657:Decision Making; D003661:Decision Support Techniques; D003922:Diabetes Mellitus, Type 1 / Q000097:blood / Q000628:therapy*; D006801:Humans; D007332:Insulin Infusion Systems / Q000523:psychology*; D019212:Multimedia; D010290:Parents / Q000193:education / Q000523:psychology*; D010353:Patient Education as Topic / Q000379:methods*; D036301:Qualitative Research; D000073597:Stakeholder Participation