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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
  1. Jan Willem Gorter1,
  2. Deb Stewart2,
  3. Eyal Cohen3,
  4. Oksana Hlyva1,
  5. Andrea Morrison4,
  6. Barb Galuppi1,
  7. Tram Nguyen2,
  8. Khush Amaria3,
  9. Zubin Punthakee5
  10. TRACE Study group
  1. 1CanChild Centre for Childhood Disability Research, Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada
  2. 2School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada
  3. 3Department of Pediatrics, Hospital for Sick Children, Toronto, Ontario, Canada
  4. 4Children's Developmental Rehabilitation Program, Hamilton Health Sciences, Hamilton, Ontario, Canada
  5. 5Department of Medicine, McMaster University, Hamilton, Ontario, Canada
  1. Correspondence to Dr Jan Willem Gorter; gorter{at}mcmaster.ca

Abstract

Objectives 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.

Design A 4-year mixed-method prospective cohort study.

Setting 2 academic paediatric hospitals (13 clinics) in Canada.

Participants 50 adolescents (42% male; mean age 17.9±0.9 years; 20 underlying diagnoses) with transfer to adult care planned within 1 year.

Interventions The Youth KIT (an organisational tool that includes goal setting activities); an online transition mentor.

Main outcome measures 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.

  • QUALITATIVE RESEARCH
  • Transition into adult heathcare
  • Chronic conditions
  • Disabilities
  • Longitudinal research

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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