title: Development and evaluation of iManage: A self-management app co-designed by adolescents with sickle cell disease.
abstract: Adolescents and young adults (AYAs) with sickle cell disease (SCD) are a vulnerable population with high risk of morbidity that could be decreased with effective self-management. Previous research suggests that mobile applications (apps) may facilitate AYA engagement in health-promoting behaviors. The objectives of this study were: (i) describe Internet access and use in AYA with SCD; (ii) identify barriers for self-management in this population; (iii) collaborate with AYA to co-design a mobile app that would minimize barriers; and (iv) evaluate the feasibility and acceptability of the app.
  
  
  
  In phase 1, 46 AYAs with SCD 16-24 years of age completed a survey of Internet access and use. During phase 2, 19 AYAs with SCD (average age 20 ± 2.5 years) and eight healthcare providers participated in interviews to identify barriers and co-design sessions to develop the app. In phase 3, five AYAs with SCD completed app feasibility and usability testing.
  
  
  
  AYAs with SCD had daily Internet access (69%) using their computers (84%) or mobile phones (70%). Participants went online for health information (71%) and preferred Web sites with interactive/social features (83%). Barriers to self-management included failing to believe that their health would suffer, lack of tailored self-management support, lack of a mechanism to visualize self-management progress, and limited opportunities for peer interaction around self-management. The prototype app (iManage) was rated as highly feasible and beneficial.
  
  
  
  A mobile app prototype co-designed by AYAs with SCD may be a useful tool for engaging them in self-management strategies designed to improve health.
authors: Division of Behavioral Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.|Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.|James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors: Lori E
authors: LE
authors: Crosby
authors: Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.|Division of Hematology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors: Russell E
authors: RE
authors: Ware
authors: Department of Psychology, Xavier University, Cincinnati, Ohio.
authors: Alana
authors: A
authors: Goldstein
authors: Division of Behavioral Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.|Department of Psychology, University of Cincinnati, Cincinnati, Ohio.
authors: Ashley
authors: A
authors: Walton
authors: Division of Behavioral Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.|Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.
authors: Naomi E
authors: NE
authors: Joffe
authors: College of Design, Architecture, Art, and Planning, University of Cincinnati, Cincinnati, Ohio.
authors: Craig
authors: C
authors: Vogel
authors: Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.|Division of Adolescent Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.|James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors: Maria T
authors: MT
authors: Britto
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000628:therapy*; D040421:Cell Phone / Q000706:statistics & numerical data*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data*; D008297:Male; D063731:Mobile Applications / Q000706:statistics & numerical data*; D010342:Patient Acceptance of Health Care; D011379:Prognosis; D012648:Self Care / Q000379:methods*; D011795:Surveys and Questionnaires; D014584:User-Computer Interface; D055815:Young Adult
keywords: AYA; Internet access; patient engagement; pediatric hematology; smartphone