Jennifer Stinson a renowned researcher in the field of chronic pain management in children, has received the 2023 Barer-Flood Prize from the Canadian Institutes of Health Research (CIHR).
The prize, named in honour of the first two Scientific Directors of CIHR-IHSPR, Drs. Morris Barer and Colleen Flood, recognizes the highest-ranking senior-career investigator who identifies as a woman, and their research excellence.
Dr. Stinson, a Professor at the Lawrence Bloomberg Faculty of Nursing, Institute of Health Policy, Management and Evaluation, and Temerty Department of Anesthesiology & Pain Medicine, is being acknowledged for her innovative work behind the development of iCanCope, a mobile app designed for young people who live with Sickle Cell Disease (SCD) to help them self-manage their chronic pain.
“The app is really intended to be an adjunct to the care that young people with SCD receive in hospital. We know we cannot cure or alleviate the pain, but we can empower young people to live well with pain, and to manage it with resources and strategies that are effective, building their confidence in leading a fulfilling life,” says Stinson who also holds the Mary Jo Haddad Nursing Chair in Child Health and is a Senior Scientist in the Child Health Evaluative Sciences in the Research Institute at SickKids.
The iCanCope app includes four key features, which allows users to track their symptoms, set structured goals to improve their function, access a curated library of evidence-based resources, and participate in a community discussion platform, where they can connect with other young people who live with SCD. The app has been intentionally co-designed with young patients and clinicians to ensure it is meeting the needs of this care population.
“The three main messages we heard in some of our initial consultations was that the app needed to be simple, provide a safe place for community engagement and discussion, and focus on living life, not just on pain,” says Stinson.
Sickle Cell disease is an inherited disorder that affects mostly people of African American descent, causing the red blood cells to sickle and curve, leading to blockages in veins and arteries. This process leads to acute vaso-occlusive episodes, which can manifest as trouble breathing and intense pain. Stinson notes that because individuals are born with this disease, they often develop persistent pain over-time.
iCanCope uses its validated clinical algorithm to push strategies and resources to a user if they indicate they are having trouble with an issue related to their pain, or if they are looking to set a goal to improve their wellbeing, such as improving sleep. The resource library is another feature that allows users to not only find education about their pain, but also access youth-friendly materials that address mental health, anxiety, and topics related to their transition to adult care.
“These kids will become young adults with persistent pain, and with iCanCope we are giving them the tools early in life to be able to manage their pain using appropriate coping techniques and strategies that improve their life satisfaction and well-being,” says Stinson.
Stinson has rigorously evaluated the app in a randomized control trial involving 111 youth who lived with SCD pain. After six months, youth who received the iCanCope intervention reported 37 per cent fewer days with pain than those who received education alone. The iCanCope program was also associated with a reduction in average daily pain intensity from baseline to 6-month follow-up. Qualitative data revealed that most youth would continue to use the program (92 per cent) and would recommend it to others (83 per cent).
With the support of the Barer-Flood prize, Stinson is now implementing the app in SCD clinics across Canada and assessing how these clinics prescribe and champion the app for patients, and what obstacles might be in the way of ensuring all patients have access to the app. The multidisciplinary team, led by Dr. Stinson and co-PI Dr. Chitra Lalloo (The Hospital for Sick Children; University of Toronto), includes top researchers and clinicians from across North America as well as three youth patient partners with lived experience of SCD pain.
“As a nurse practitioner in a chronic pain clinic, if I were to prescribe a digital health app, I would want to ensure that it was evidence-based, that it was co-designed and that it has been shown to improve outcomes,” says Stinson. “Through our research and rigorous evaluations, we are helping care providers be more confident in prescribing iCanCope.”