Sickle Cell Disease (SCD) is a chronic condition that prevents red blood cells from delivering oxygen to organs and tissues throughout the body. Red blood cells will take on a rigid, sickle cell shape, prone to clumping and obstructing the regular flow of blood and oxygen, causing painful episodes known as a vaso-occlusive crisis.
Studies demonstrate the transition from pediatric to adult care is a critical period impacting the quality of life and life expectancy. In Ontario, the transition from pediatric to adult care occurs at age 18. SCD patient data from the United States have reported an increased mortality rate among patients between the ages of 16-24, which coincides with the time of transition from pediatric to adult care.
Previous studies conducted with youth with SCD, and their families/caregivers revealed that this transitionary period comes with several significant challenges that drastically impact the trajectory of their quality of life and make the daily management of SCD extremely difficult.
WHAT ARE WE DOING?
We will use a co-design and participatory research methodology to develop an intervention to support youth with SCD transitioning from pediatric to adult care. Our team has partnered with the Board Members of the Sickle Cell Awareness Group of Ontario (SCAGO) to plan for the implementation and evaluation of the intervention beyond the Capstone project. We will be using the Consolidated Framework for Implementing Research (CFIR) to evaluate the intervention.
We will recruit 5-10 participants from the SCAGO network. They are composed of youth with SCD, parents and caregivers of youth with SCD, and healthcare professionals.
Sessions & Workshops
We will conduct five sessions, developed using the Toronto Translational Framework, with a total of two workshops conducted with participants: 1) Frame the context and 2) Ideate and select an intervention.
We will continually seek feedback from participants and iterate to improve the design and develop an intervention that addresses the needs of transitioning youth with SCD.
The transition from pediatric to adult care for youth with SCD can be eased through an intervention that will support them in becoming transition ready. This is in line with the vision of the Translational Research Program (TRP) to “[a]pply (scientific) knowledge to improve medicine, health & care!”
To date, our team
Conducted informal interviews with advocates and patients with SCD
Conducted an Environmental Scan and Literature Review
Developed a project proposal
Created a brand guide and app prototype
Presented at the 2022 Laboratory Medicine and Pathobiology Research Conference
Received funding through the Young Researchers Award of the Sickle Cell Awareness Group of Ontario
AWARDS & RECOGNITIONS
TRP Students Receive the 2022 SCAGO Young Researchers’ Award
TRP | December 14, 2022 - The Sickle Cell Awareness Group of Ontario (SCAGO) announces recipients of the 2022 Young Researcher’s Award Program (YRAP), a team of Masters students at the University of Toronto’s Translational Research Program: Geil Astorga, Fairuz Karim, Peola Ellis, Janine Noorloos, and Jaspreet Randhawa. READ THE STORY
The Sickle Cell Awareness Group of Ontario Presents the 2022 Young Researchers’ Award Recipients