title: Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: a mixed-methods longitudinal prospective cohort study.
abstract: OBJECTIVE
  To assess use, utility and impact of transition interventions designed to support and empower self-management in youth with chronic health conditions during transition into adult healthcare.
  
  
  METHODS
  A 4-year mixed-method prospective cohort study.
  
  
  METHODS
  2 academic paediatric hospitals (13 clinics) in Canada.
  
  
  METHODS
  50 adolescents (42% male; mean age 17.9±0.9 years; 20 underlying diagnoses) with transfer to adult care planned within 1 year.
  
  
  METHODS
  The Youth KIT (an organisational tool that includes goal setting activities); an online transition mentor.
  
  
  METHODS
  Frequency of use, utility and impact of the transition interventions; goal achievement; post-transfer qualitative interviews with youth.
  
  
  RESULTS
  50 participants were enrolled during their last year of paediatric care; 36 (72%) were followed into adult care. All participants had access to the transition interventions from enrolment until the end of the study (exposure time: 12-47 months). Most youth (85%) reported using the medical/health section of the Youth KIT at least once; 20 (40%) participants engaged in chats with the mentor. The overall perceived utility of both interventions was modest; the Youth KIT received the highest ratings for 'help with goal setting': (mean (SD): 4.2 (2.3)) on a 7-point Likert scale. 45 (90%) participants set 294 transition goals. Goal achievement performance and satisfaction increased over time (p≤0.001). The qualitative evidence revealed reasons behind the variability in use and utility of the interventions, the interconnectedness of life-course and healthcare transitions, and the need for stronger partnerships between paediatric and adult healthcare systems.
  
  
  CONCLUSIONS
  Participants' perceptions about the utility of the Youth KIT and the online mentor were modest. Transition supports need to be carefully tailored, timed and integrated into healthcare systems. Individualised goal setting may be an important 'active ingredient' in optimising transition supports and outcomes. Interventions that focus on youth only are insufficient for empowering self-management.
authors.affiliation: CanChild Centre for Childhood Disability Research, Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Jan Willem
authors.initials: JW
authors.lastname: Gorter
authors.affiliation: School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Deb
authors.initials: D
authors.lastname: Stewart
authors.affiliation: Department of Pediatrics, Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Eyal
authors.initials: E
authors.lastname: Cohen
authors.affiliation: CanChild Centre for Childhood Disability Research, Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Oksana
authors.initials: O
authors.lastname: Hlyva
authors.affiliation: Children's Developmental Rehabilitation Program, Hamilton Health Sciences, Hamilton, Ontario, Canada.
authors.forename: Andrea
authors.initials: A
authors.lastname: Morrison
authors.affiliation: CanChild Centre for Childhood Disability Research, Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Barb
authors.initials: B
authors.lastname: Galuppi
authors.affiliation: School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Tram
authors.initials: T
authors.lastname: Nguyen
authors.affiliation: Department of Pediatrics, Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Khush
authors.initials: K
authors.lastname: Amaria
authors.affiliation: Department of Medicine, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Zubin
authors.initials: Z
authors.lastname: Punthakee
mesh_terms: D000293:Adolescent; D000328:Adult; D002170:Canada; D002908:Chronic Disease; D003695:Delivery of Health Care / Q000458:organization & administration*; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D010372:Pediatrics / Q000458:organization & administration*; D011446:Prospective Studies; D036301:Qualitative Research; D020377:Self Efficacy; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care / Q000592:standards* / Q000706:statistics & numerical data; D055815:Young Adult
keywords: Chronic conditions; Disabilities; Longitudinal research; QUALITATIVE RESEARCH; Transition into adult heathcare