title: Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study.
abstract: BACKGROUND
  Stigma in chronic disease involves unwarranted rejection, judgement, or exclusion by others based on the chronic disease itself.
  
  
  OBJECTIVE
  We aim to determine the prevalence of stigma among youth and young adults with type 1 diabetes in Canada, to assess associations between stigma and glycemic control, and to explore ways to address stigma related to type 1 diabetes.
  
  
  METHODS
  The study includes 3 distinct phases: (1) refinement of survey questions, (2) assessment of test-retest reliability, and (3) a data collection and analysis phase (online survey and mailed-in capillary blood sample to assess hemoglobin A1c). A total of 380 youth and young adults (14 to 24 years old) with type 1 diabetes are being recruited through social media and clinic posters.
  
  
  RESULTS
  Phases 1 and 2 are complete, and phase 3 is in progress. Thirty participants completed phase 2. The survey includes the Barriers to Diabetes Adherence in adolescent scale (intraclass correlation [ICC]=0.967, 95% CI 0.931-0.984), the Self-Efficacy for Diabetes Self-Management measure (ICC=0.952, 95% CI 0.899-0.977), the World Health Organization-5 Well-Being Index (ICC=0.860, 95% CI 0.705-0.933), 12 closed-ended questions, and an additional 5 open-ended questions to explore challenges and solutions developed by the team of experts, including a patient representative.
  
  
  CONCLUSIONS
  This will be the first large-scale survey to estimate the prevalence of stigma in young people with type 1 diabetes. The results of this study will allow for an appreciation of the magnitude of the problem and the need for developing and implementing solutions. This work is intended to provide an initial understanding of youth perspectives on the challenges of living with type 1 diabetes and will serve as a foundation for future research and action to help youth improve their experience of living with diabetes.
  
  
  BACKGROUND
  ClinicalTrials.gov NCT02796248, https://clinicaltrials.gov/ct2/show/NCT02796248 (Archived at http://www.webcitation.org/6mhenww3o).
authors.affiliation: Department of Medicine, McGill University, Montreal, QC, Canada.
authors.forename: Anne-Sophie
authors.identifier: http://orcid.org/0000-0002-2699-2920
authors.initials: AS
authors.lastname: Brazeau
authors.affiliation: Department of Medicine, McGill University, Montreal, QC, Canada.
authors.forename: Meranda
authors.identifier: http://orcid.org/0000-0001-5833-5303
authors.initials: M
authors.lastname: Nakhla
authors.affiliation: Concordia University, Montreal, QC, Canada.
authors.forename: Michael
authors.identifier: http://orcid.org/0000-0001-5722-0539
authors.initials: M
authors.lastname: Wright
authors.affiliation: BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.
authors.forename: Constadina
authors.identifier: http://orcid.org/0000-0002-1379-7472
authors.initials: C
authors.lastname: Panagiotopoulos
authors.affiliation: Alberta Children's Hospital, University of Calgary, Calgary, AB, Canada.
authors.forename: Daniele
authors.identifier: http://orcid.org/0000-0001-6337-7241
authors.initials: D
authors.lastname: Pacaud
authors.affiliation: Centre Hospitalier Universitaire Sainte-Justine, Université de Montréal, Montreal, QC, Canada.
authors.forename: Mélanie
authors.identifier: http://orcid.org/0000-0002-0102-2389
authors.initials: M
authors.lastname: Henderson
authors.affiliation: Department of Medicine, McGill University, Montreal, QC, Canada.
authors.forename: Elham
authors.identifier: http://orcid.org/0000-0002-4168-4993
authors.initials: E
authors.lastname: Rahme
authors.affiliation: Department of Medicine, McGill University, Montreal, QC, Canada.
authors.forename: Deborah
authors.identifier: http://orcid.org/0000-0003-4993-4544
authors.initials: D
authors.lastname: Da Costa
authors.affiliation: Department of Medicine, McGill University, Montreal, QC, Canada.
authors.forename: Kaberi
authors.identifier: http://orcid.org/0000-0002-2447-3553
authors.initials: K
authors.lastname: Dasgupta
keywords: perception; stigma; type 1 diabetes; well-being; youth