Newsletter 2 | May 31 2018
Transition Stakeholder Alliance Network
Hello everyone,
The spring weather is finally here! And with that comes the second edition of the Transition Stakeholder Alliance Network newsletter. You will see by the updates below that many of us have been busy over the winter months. If you would like to see anything new in the next newsletter or have anything to add, please be in touch. We are always happy to further develop the content of these newsletters to keep you up-to-date and further encourage communication and collaboration.
Enjoy the sunshine!

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 study team is making one final push to recruit as many patients as possible from the 9 participating clinics at McMaster Children’s Hospital. The deadline to complete recruitment and baseline visits was extended from March 31st 2018 to June 30th 2018. HAHSO, the funding agency, has granted the study a 6-month no-cost extension, allowing the team to extend the recruitment period. This extension will ensure there is time for the 6 month follow-up period of the enrolled participants and then also additional time for data entry, cleaning, and analysis.

To date, 96 participants have agreed to be in the study, with the target of 100. Baseline visits started end of January 2018 and 30 participants have completed this visit so far. Some of these participants are already starting the 3 month follow-up visit. The team is still trying to reach and complete the baseline visit with 34 of the participants who agreed to be in the study. Since initial agreement to be in the study, 32 participants have declined. We are hopeful to have 50 baseline visits completed by the end of June 30th 2018.

Website: ApplyIT Study
READYorNot Study - READiness in Youth fOr traNsition Out of pediaTric care

Marelli, A., Gorter, JW., Khush, A.
The READYorNot Transition project is one of the CHILD-BRIGHT network of projects funded through the Canadian Institutes of Health’s SPOR initiative (SPOR – Strategy for Patient Oriented Research). In this project, Dr. Gorter’s team has worked together with healthcare professionals, technology designers, youth and families to create the MyREADY Transition App. MyREADY Transition App is designed for young people between 15 and 17 years old who are in pediatric health care and one day will be entering adult health care. It is designed for people with cerebral palsy, spina bifida, epilepsy, autism, or fetal alcohol syndrome who are beginning to take charge of managing their own health care. Users have their own personal mentor to help them journey through the App’s city landscape. By visiting different places in the city, watching videos, and completing challenges, MyREADY Transition App makes it fun to learn and practice managing medical information and other skills to help users get ready for adult health care. 

Over the next few months, there will be some preliminary user testing with the MyREADY Transition App. Later in 2018, the READYorNot Transition Project will do a randomized control trial (RCT), recruiting youth in Alberta, Ontario, Quebec and the Maritimes to determine whether the group who use the MyREADY Transition App will have improved transition readiness (specifically improved self-management and self-advocacy skills) compared to youth who receive usual care.  

Participants Needed: In the summer of 2018, READYorNot is looking to recruit young people who are 15-17 years old (with a diagnosis of autism, cerebral Palsy, epilepsy, FASD or spina bifida) to do some user testing of the app. Participants will receive a trial version of the app and will provide written feedback as well as be interviewed over the telephone or in-person. For more information about participating, please contact the study’s Research Coordinator, Sonya Strohm, at .

Website: READYorNot Study
OCHSU Transition Group

Gorter, JW., Amaria, K., Grant, C., Kingsnorth, S., Speechly, 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 will resume monthly meetings this spring to continue discussions regarding further funding opportunities, including the recently announced Transition in Care Program by the Canadian Institute of Health Research and also ways to continue collaborations within the network and beyond. For more information about the CIHR funding opportunity, please contact Dr. Jan Willem Gorter at .
The OCHSU Writing Group continues to work on the validation paper of the TRANSITION-Q. Progress has been made over the winter months and the team is hopeful to submit the manuscript before July 2018.
CIHR-SPOR Funding, 2018 CHILD-BRIGHT Summer Studentship Program
Congratulations to  Dr. Jan Willem Gorter  on receiving funding (50% of her salary up to $5000) for his summer student at CanChild,  Julia Hanes . Julia Hanes is a McMaster graduate who currently is in medical school in Ottawa. Last year she worked with CanChild and co-produced the F-Words video: see it here . She has also been the youth advisor on the ApplyIT Study. Over the summer Julia will join the ReadyOrNot research team.

Ontario Graduate Scholarship
Congratulations to  Linda Nguyen (PhD Candidate) under the supervision of  Dr. Jan Willem Gorter  on being awarded the OGS Scholarship for $15,000 for the 2018-19 academic year, in support of her PhD studies on the role of siblings of youth with disabilities in their transition to adulthood process. This award is funded in part by the Government of Ontario under the Ontario Graduate Scholarship and Queen Elizabeth II Graduate Scholarship in Science and Technology awards program ($10,000) and in part from a matching award either from a donor award or McMaster University ($5,000).
The Journal of Transition Medicine
Dr. Jan Willem Gorter and Sophia Zhang-Jiang (BHSc student) have published the following in the above journal: " The use of the Rotterdam Transition Profile: 10 years in review "

The aim of this literature review was to describe the use and utility of the Rotterdam Transition Profile (RTP), as we near the tenth year since its publication in 2008. It is a tool to summarize a youth’s transition process to adulthood by classifying various domains of participation and health care into developmental stages. This review provided a comprehensive synthesis of available knowledge on the RTP by summarizing published and grey literature. Using search terms related to transition, social participation, and questionnaire, a systematic search was conducted for literature up to November 2017 in MEDLINE and Embase databases and was supplemented with a hand-search using Google Scholar and a general internet search using Google Search. Inclusion criteria were specified to determine the papers selected for review, yielding fifty-five materials for detailed review. Combined analysis of published and grey literature identified nine papers that used some form of the RTP as a measure, eighteen materials that cited the RTP or its domains but did not employ it as a measure, and twenty-eight materials that cited the original RTP development and validation paper for information not directly related to the RTP. The literature demonstrated that the RTP seems to be a useful tool to describe and monitor the transition process of adolescents and young adults, in both research and clinical settings. While it has been used with youth of 14 to 31 years of age across genders and health conditions, more evidence is needed to demonstrate its psychometric properties beyond construct validity in young adults with cerebral palsy.
McMaster Child Health Conference, Hamilton, Canada
Linda Nguyen , a McMaster University PhD student, gave a workshop presentation of the ApplyIT Study at the 3rd Annual McMaster Child Health Conference on March 10th 2018. The theme of this conference was: Growing Up in a Digital Tech World. The workshop was a good opportunity to share with students about the MyTransition App and the research in its development.

Australasian Academy for Cerebral Palsy and Developmental Medicine (AusACPDM), Auckland, New Zealand
A successful 3 hour pre-conference workshop on Wednesday March 21st, 2018: "The ABCs for improvement of Transition to Adulthood", was organized by Dr. Jan Willem Gorter with colleagues from both pediatric and adult health providers in New Zealand and Australia, as well as representatives of youth from the Cerebral Palsy Society New Zealand.

Canadian Down Syndrome Association Meeting, Hamilton, Canada
Dr. Jan Willem Gorter presented a workshop entitled “The ABCs for Transition to Adulthood for Youth with Down Syndrome” at the above (co-hosted with Halton Down Syndrome Association and Down Association of Hamilton) on Sunday May 20th 2018. There were about 50 families and young people with Down Syndrome in the audience. The MyTransition App was presented at the workshop.
Bridging the Chronic Care Gap
Dr. Caitlin Cassidy was showcased in the *Catalyst for her work in bridging the chronic care gap. Dr. Cassidy has successfully set up the Transitional and Lifelong Care Program. The clinic is one of the first in Canada to bridge the gap between pediatric care and adulthood for those suffering with chronic illness like spina bifida and cerebral palsy. You can read the article here .

Knowledge Up-Take
The MyTransition App is now part of the On My Way: Transition to Adult Care program at the Children’s Hospital of Eastern Ontario (CHEO). This is a great example of knowledge up-take beyond the McMaster site. Click here for further information.

CAPHC Presents!
CAPHC Presents! is a weekly webinar program dedicated to bringing together trusted and credible voices from across the child and youth healthcare continuum. On Wednesday June 6th 2018 from 11:00am to 12pm EDT , a team from Alberta Health Services will describe the initiatives and research that has brought together the children's hospitals, the community and the rehabilitation hospital through a collaborative research project to improve outcomes for children and families during and after transition. Click here for more information and to register.

White Coat, Black Art (CBC Radio One)
Dr. Jan Willem Gorter has been invited by White Coat, Black Art to be part of a panel of parents and experts to talk about how to fix the broken circle of care for high-needs kids as they age out of the pediatric system. Dr. Gorter will share his experience working with teenagers and their families and advocate for a national strategy for disability support. This forum, Crisis of Care: Help for families and their high-needs kids as they age out of the system, led by Dr. Brian Goldman, will take place on Tuesday June 12th 2018 from 6:30pm to 8:30pm EDT . Click here for more information and here to register.
It is our hope to plan another Transition Stakeholder Alliance Network meeting for August 2018 . We will circulate a save-the-date soon.
McMaster University | 1400 Main Street West, IAHS 408 | Hamilton, Ontario | L8S 1C7 Canada