TRansition to Adulthood with Cyber guide Evaluation (TRACE)

Description

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.

Funders

AHSC AFP Innovation Fund (2009-2011)
AHSC AFP Innovation Fund (2011-2013)

Outcomes (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.

Resources

• The KIT: Keeping it Together™ for Youth
• Best Practice Guidelines for Transition to Adulthood
• Ability Online
  

Newsletters

• TRACE newsletter for study participants  

Presentations

Poster Presentation. Holland Bloorview Kids Rehabilitation Hospital and CNIB. Transitions Conference 5. Partnerships: Together for LIFE. Toronto, Ontario, Canada. May 31, 2010. Transition to Adulthood: A Pilot Study Using KIT and an Online Transition Coordinator. Presented by:  Jan Willem Gorter

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

Reports

Pending

Articles

Pending