TECC-T1D3: Technology-enabled Comprehensive Care for young adults with Type 1 Diabetes and Diabetes Distress
Diabetes distress, the negative emotional feelings resulting from living with diabetes and the burden of selfmanagement, is a very common challenge for people living with type 1 diabetes affecting approximately 40%. It has a major impact on well-being and prevents effective diabetes self-management, increasing the risk of other diabetic complications. Although diabetes distress can lead to depression, it is a distinct problem. It affects younger adults and non-white women more often. Affected individuals have limited access to specialist care for either their diabetes or mental health challenges and very few have a one stop shop solution where all their needs are met. Effective support for diabetes distress requires expertise in both areas – which is not currently available outside of a small number of specialised centres.
This project aims to bring experts in mental health and type 1 diabetes care together with those who have lived experience with type 1 diabetes to co-develop an accessible, acceptable, solution for diabetes distress that will be used by many affected people across Canada. We will develop the program for young adults between the ages of 18 and 29) because this is recognized to be a vulnerable group and we believe that helping at this stage can build lifelong skills and capacity for individuals and their families to more effectively manage diabetes distress.
The patient voice has been critical in shaping this application, and will be central throughout the project. A key recommendation of our patient partners was that it was essential that there should be multiple ways for people with type 1 diabetes to access any intervention – irrespective of geography and should not be dependent on physician referrals. The project will therefore use social media and existing networks, including a national, digital-first type 1 diabetes registry (www.connect1d.ca), as well as more traditional routes (e.g. diabetes clinics) to recruit participants. Several approaches to managing diabetes distress have been shown to work in research studies, but many have been based in clinics and/or led by highly paid professionals. This project seeks to adapt proven approaches and strategies – capitalizing on the digital literacy of this population – to deliver remotely (using video chat, telephone calls and text messaging) an effective intervention for diabetes distress in a real-world setting using a care coach and peer support, supported and directed by mental health and type 1 diabetes experts.
The intervention will be co-developed with our patient partners using the Optimal Health Program as a framework. (The Optimal Health Program was developed by one of the applicants and helps users develop skills and resources over 8 one-hour sessions to maintain hope and self-agency in the face of life’s challenges. The program helps people maintain optimal health, respond to sub-optimal health, and handle episodes of illness or trauma, and has been shown to be effective in adults with type 2 diabetes.) There are well established tools to identify people who may have diabetes distress (using 2 questions) and measure how bad it is (a 28 question survey). Individuals with diabetes distress will be invited to participate in the program which will comprise 8 scheduled sessions, complemented by support from a care coach and/or peers. The evaluation of the intervention will examine both feasibility and acceptability of the program as well as how effective it was to reduce diabetes distress. It will also be important to examine whether the intervention has impacts on diabetes self-care, overall blood glucose levels, episodes of low blood glucose.
JDRF has committed to supporting and creating a holistic framework for mental health treatment and care for all people in Canada living with T1D. Their support for this project is another step in that direction.
Peter Selby , Centre for Addiction and Mental Health
Tracy McQuire, Unity Health Network
Linxi Mytkolli, Mental Health Commission of Canada
Bruce Perkins, Mount Sinai Health
Quynh Pham, University Health Network
Barry Simon, Sinai Health Systems
Melanie Yeung, University Health Network
Kate Farnsworth, Diabetes Action Canada
Ishan Aditya, University of Toronto
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