Newsletter 1 | December 21 2017
Transition Stakeholder Alliance Network
Hello everyone,
We are delighted to bring you this first edition of the Transition Stakeholder Alliance Network newsletter. Our mission is to help you keep up-to-date with current research projects related to transition to adulthood, as well as news and events of interest.
We hope these newsletters will help you stay connected as a group as well as further encourage communication and collaboration. Newsletters will be circulated quarterly and we hope to further develop the content and aims based on your feedback and needs.
Warm wishes for a wonderful Holiday season!
Jan Willem Gorter , MD, PhD, FRCPC
Director of CanChild | Scotiabank Chair in Child Health Research
McMaster University | McMaster Children's Hospital
ApplyIT Study - Apply (the app) In Transition

Gorter, JW., Grant, C., Thabane, L., Arora, S., Mondal, T., Don-Wauchope, A., Punthakee, Z., Ronen, G., Breakey, V.

The ApplyIT project, a small RCT, is both a feasibility study and an evaluation of the effectiveness of the MyTransition app in supporting youth moving from pediatric to adult healthcare. Recruitment is underway at the 9 participating clinics at McMaster Children's Hospital in Hamilton.
To date, over 34 participants have agreed to be in the study, with a target of 100. Study visits will start in January 2018 and recruitment will carry on until April 2018. For more information, please click the link below.

Website: ApplyIT Study
READYorNot Study - READiness in Youth fOR traNsition Out of pediaTric care
Website:  READYorNOT
Marelli, A., Gorter, JW., Khush, A.
The READYorNOT project, part of the CHILD-BRIGHT Network, is developing and evaluating e-health aids to help patients and families take charge of their transition.
The project is currently in the app development phase and is working towards the roll out of a RCT in the spring of 2018. For more information, please click the link below.
OCHSU Transition Group

Gorter, JW., Amaria, K., Grant, C., Kingsnorth, S., Speechley, K., Guerra, H., Breakey, V., Cassidy, C., Krantz, C., Taube-Schiff, M., Doyle-Lisek, S., Grewal, K., McCauley, D., Akrong, L.
The OCHSU Transition Group continues to meet monthly to discuss project updates, further funding opportunities, and ways to continue collaborations within the network.
The team is also working on a validation paper of the TRANSITION-Q and hopes to submit the manuscript for publication in January 2018.
Recent Publications

Tram Nguyen, a recent PhD graduate from SRS/CanChild (supervisor Jan Willem Gorter in 2016) and now a post-doc in Ottawa, recently had two articles on transition to adulthood published.
BACKGROUND:  Transition to adulthood is a significant development process experienced by all youth. Since the mid 1990s, researchers at the CanChild Centre for Childhood Disability Research have been studying this process to assist transitioning youth with disabilities and their families. The objective of this narrative review is to reflect on the work conducted by CanChild researchers, in collaboration with stakeholders, about transitions to adulthood for youth and young adults with disabilities since the publication of the best practice guidelines in 2009.  METHODS:  A narrative review was undertaken through a reflective approach to critically review and summarize all the transition studies completed at CanChild since 2009. The following data were systematically extracted from articles and research reports: study (authors and year of publication), purpose, methods, sample, and lessons learned.  RESULTS:  Five studies were identified. An analysis of the findings revealed five key themes that represented lessons learned since the publication of the Ontario-based best practice guidelines: promoting a noncategorical and lifecourse approach to care; active collaboration among stakeholders involved in transition; capacity building through peer mentorship; greater understanding of the significance of opportunities and experiences; as well as the significance of information, education, and research.  CONCLUSIONS:  This is the first review to provide perspective on trends in transition research since the publication of the best practice guidelines in 2009. It is hoped that this reflection will assist in the ongoing work of researchers, service providers, policy makers, communities, and families in the area of adult transitions for youth with disabilities.  Authors:  Nguyen T , Stewart D,  Gorter JW Child Care Health Dev. 2018 Jan;44(1):83-88. doi: 10.1111/cch.12534. Epub 2017 Oct 29.
BACKGROUND:  The International Classification of Functioning, Disability and Health (ICF) and subsequent ICF-CY (child and youth version) recognize the importance of personal and environmental factors in facilitating holistic transition planning and service delivery for youth with chronic health conditions (YCHC).  AIMS:  The objective of this scoping review is to investigate the degree to which the ICF and ICF-CY have been used in transition research and practice since its initial publication. METHODS:  Arksey and O'Malley's five-stage methodological framework guided the scoping review using the following databases: AMED, CINAHL, EMBASE, HealthSTAR, MEDLINE, and PsycINFO. Keywords included: 'ICF', 'ICF-CY', and 'transition', which were adapted to each database.  RESULTS:  25 articles met final inclusion. Two key themes emerged regarding use of the ICF: 1) the ICF enhances transdisciplinary processes to inform transition planning and interventions; and 2) the ICF facilitates comprehensive and developmentally appropriate transition services over a youth's lifecourse. The strengths and limitations of the ICF in guiding the planning and delivery of transition services are discussed. Some limitations include the large number of items inherent within the ICF and a lack of clarity between the components of activity and participation.  CONCLUSION:  Key recommendations include: i) further explanation and development of items for quality of life and well-being, personal factors, and psychological issues; and ii) additional research to advance knowledge towards developing empirically- based evidence for the application of the ICF in clinical practice to facilitate transition. Authors:   Nguyen T , Stewart D, Rosenbaum P, Baptist S, Kraus de Camargo O,  Gorter JW . Res Dev Disabil. 2017 Dec 1;72:225-239. doi: 10.1016/j.ridd.2017.11.003. [Epub ahead of print].

In October 2017, Khush Amaria presented both a poster (OCHSU) and presentation (ApplyIT) at the 18th Annual Chronic Illness and Disability Conference, Transition from Pediatric to Adult-based Care. The poster generated a lot of discussion and the presentation was very well received. The audience was very excited to see (and use!) the app and are eager to help with testing. We can plan to be back next year with more data!
In the Media
Making Transition Easier was recently added to the blog of the Hamilton Health Sciences Foundation. Take a look: