TRansition to Adulthood with Cyber guide Evaluation (TRACE)

Youth with chronic health conditions experience poor healthcare and poor outcomes during transition to adult care. Little evidence exists about the effectiveness of transition services and supports. Consistent with best practice guidelines for transition developed in Ontario, the study seeks ways to improve health service delivery to youth in transition and, in so doing, to address this important contemporary health challenge.

More specifically, this study evaluates the use, utility and impact of a novel intervention including two distinct resources:

  1. the Youth KIT (The KIT: Keeping it Together for Youth) and
  2. an online Transition Coordinator or "Cyber guide", who interacts with study participants via Ability Online.

This Transition to Adulthood with Cyber guide Evaluation (TRACE study) is an intervention intended to empower youth to take charge of their health and healthcare. A convenience sample of 30 adolescents with various chronic health conditions will be followed as they transition to adult care, with two of the study visits taking place in the pediatric care setting and two in the adult care setting.

The additional funding made it possible to extend the study for another two years (2011-2013) as well as to the second site at SickKids Hospital in Toronto.

The primary objective of the study is to evaluate to what degree youth with a variety of chronic conditions will utilize the transition intervention prior to and during transition to adult care. Secondary objectives are to determine perceived utility, and impact on self-determination and perception of care, and to inform a larger randomised trial with an eventual aim to improve transition planning and practice for all youth with chronic conditions.

Research Team

Principal Investigators

Jan Willem Gorter MD PhD (lead-PI) and Zubin Punthakee MD (co-PI)

Co-investigators

Steve Arora MD, Herbert Brill MD, Andrew Don-Wauchope MD, Christina Grant MD, Kim Nagel MSc, Peter Rosenbaum MD, Debra Stewart MSc, Eyal Cohen MD, MSc, and Khush Amaria, PhD.

For more information, please contact:

Oksana Hlyva, Research Coordinator.

Outcome (Measures)

The outcomes of utilization, utility and impact will be measured with both quantitative and qualitative methods.

Utilization: Completeness of Youth KIT sections, logs of online activity with the Transition Coordinator and self-reported frequency of use.

Utility: Questionnaires rating usefulness of components of the intervention. Focus group interviews to further explore the experiences of the participants.

Impact on self-determination: Questionnaires about perception and satisfaction with adult care [Giving Youth a Voice (GYV) and the Client Satisfaction Questionnaire (CSQ)]. Also success in achieving personal goals (COPM), clinic attendance and unplanned hospital visits. 

Project Updates

Private TRACE community on:

Updates for Study Participants

Presentations & Workshops

Transition to Adulthood with Cyber Guide Evaluation Study: Emergent Transition Profiles Among Youth with Chronic Health Conditions. Jan Willem Gorter, Andrea Morrison, and Oksana Hlyva.

  • Presented at the Ontario Association of Children's Rehabilitation Services (OACRS) Annual Conference, November 2012

Posters

Perceived Needs of Youth with Chronic Medical Conditions During the Transition to Adult Healthcare System. Dana Henderson, Shannon Hudson, & Evelyn Kosteltz, MSc. OT Candidates, 2012. Supervisor: Deb Stewart, MSc (OT).

  • Presented at the Ontario Association of Children's Rehabilitation Services (OACRS) Annual Conference, November 2012

Qualitative study of the use, utility, and impact of a transition coordinator and Youth KIT among adolescents with chronic conditions. Vanessa Matias and Mary Thurgood, MSc OT Candidates 2011. Supervisor: Deb Stewart, MSc (OT).

  • Presented at the Ontario Association of Children's Rehabilitation Services (OACRS) Annual Conference, November 2011

The utilization, utility and impact of a Transition Coordinator and the Youth Kit© among adolescents with chronic health conditions as they transition to adulthood. A pilot study. Jan Willem Gorter.

  • Presented at Holland Bloorview Kids Rehabilitation Hospital and CNIB. Transitions Conference 5. Partnerships: Together for LIFE. Toronto, Ontario, Canada. May 31, 2010.

Resources