As part of an ongoing series, I will be featuring interviews with the talented researchers and community innovators who were awarded one of three Hermès Canada | MS Society Wellness Research Innovation Grants to give you a glimpse at the amazing personalities and stories behind the research. Last week, I featured one of the teams from Saskatoon who have set out to study the impact of a Pilates program in people living with MS. This week, I’ll be featuring Dr. Ann Yeh, who is an Associate Professor of Paediatrics at University of Toronto and Staff Neurologist at the Hospital for Sick Children, and community innovator Adam McKillop, President and CEO of Kite & Canary, the digital design and development company tasked with developing a physical activity mobile application (app) for children and adolescents living with MS. The study is titled “Development and Usability Testing of the ATOMIC (Active Teens MultIple sClerosis) Mobile App to Increase Physical Activity Levels in Youth with Multiple Sclerosis”
Meet the Researcher: Dr. Ann Yeh
How did you first become involved in the field of MS?
When I was training in pediatric neurology, I did not know that MS occurred in children. However, while I was still in training, my mentor and future colleague approached me about a population of children with inflammatory CNS disease in whom little was understood with regards to treatment, outcomes and risk of recurrence. The families faced uncertainty as did we as clinicians. Because of this, and growing knowledge that MS did occur in children, we started a center focused on children with MS and related conditions. We were fortunate to receive support from the NMSS in the US to build a pediatric MS center of excellence, where we were able to provide comprehensive clinical care to children with MS and start on our journey of understanding pediatric MS and related conditions.
What do you enjoy most about working in the MS field? What are some challenges you have faced and how have those challenges shaped your research?
Working in the MS field provides the unique opportunity to do clinically relevant research which brings together disparate fields including rehabilitation medicine, immunology, visual science, neurology, kinesiology, physics/imaging, cognition, and psychology, among other areas. The wonderful colleagues, patients and families that I have the privilege of working with are the best part of the field. The experience of learning together with a team of people allows us as a group to address the complex clinical problems that we face every day. In addition, my work helping families and children understand and manage MS and other neuroinflammatory disorders is hugely rewarding, as we are able to offer effective therapies to them, and a comprehensive team approach devoted to supporting the well-being of the child and family.
Perhaps the greatest challenge we face in the clinical care of children with MS is understanding and predicting the future for families, and helping youth to navigate their way through living with a chronic illness. We have found high levels of disease activity and high levels of depression and fatigue in the children we care for, yet knowledge about how to combat this in ways that can complement disease modifying therapies is scarce. These clinical observations have led to my focus on understanding outcomes in children with pediatric MS, the processes that drive those outcomes, and interventions that might help to improve those outcomes.
What does wellness mean to you, and why is the study of wellness approaches and strategies an important priority in MS research?
My understanding of wellness revolves around the notion of physical and emotional well-being, which may be supported and improved by lifestyle and other factors. Previous research has shown that pathophysiological and psychosocial benefits in MS may result from lifestyle changes, making it an important research priority with many policy and scientific implications.
We have learned over the years that while use of pharmacological agents may reduce disease activity in MS, multiple other factors contribute to experiences and symptoms related to MS. Indeed, in our work, we have found high levels of fatigue and depression in youth with MS, others have shown an association between obesity and MS disease activity, and we have found associations between depression, fatigue, disease activity and levels of physical activity. Importantly, many lifestyle factors may be modifiable, including the area on which we have focused this research, physical activity.
Finally, the most common questions that families and youth living with MS ask me revolve around lifestyle changes that can be made that might improve outcomes in MS youth: research in this area is in its infancy. We need to be able to provide clear and scientifically sound answers to these questions to families and the scientific community.
Describe the importance of collaborating with a community innovator(s) or academic researcher(s). How will collaboration maximize the quality and impact of your study on wellness outcomes for people affected by MS?
Our previous research has suggested that physical activity may have significant effects on MS disease activity and related symptoms in children with MS, and that levels of physical activity are very low in children with MS. Finding a way to improve well-being of children and youth with MS through physical activity is the goal of our current work. Our past experience and that of others told us that traditional ways of offering physical activity programs in a research setting, such as group based classes, were ineffective and unsustainable –i.e. did not lead to change in behavior after cessation of the intervention, especially for the pediatric population. We hoped to address this with our work.
While we had the idea to make a flexible, interactive app-based physical activity intervention which would be appealing to youth, we did not have the tools or expertise to create it. Developing this within the university would have meant a very long and perhaps less informed period of development. We were very fortunate to find Kite and Canary, our collaborator, whose specific expertise, development of medical based apps with previous experience with pediatric populations, who has taken us quickly and efficiently through the many complicated steps related to app development.
Why is it important for people affected by MS to be meaningfully engaged throughout the research process? How does your study engage members of the MS community?
People affected by MS are the consumers of medical interventions focused on improving MS outcomes. We strongly believe that while scientific knowledge is produced in a laboratory setting, the interventions associated with translating the scientific knowledge to practice must be informed by the needs and preferences of those who will ultimately use them. In our specific situation, the success of the intervention (i.e. successful uptake of the physical activity app) is dependent wholly on finding a method that is appealing to youth. For this reason, we have enlisted youth with MS to participate in interviews and groups that will review iterations of the app, and, as well, on our patient-centered steering committee.
Meet the Community Innovator: Adam McKillop, Kite & Canary
Describe why you became involved in this research study. What motivates you to learn more about wellness in people affected by MS?
As a digital design and development company, our team looks for new and challenging projects that provide valuable solutions. Our work will engage children and adolescents living with MS to help inform the development of a mobile application. We are excited to work on this research study to gain a better understanding of people with MS and learn about end-user preferences so we can design an app that meets user needs and expectations. We are excited to learn about young individuals with MS and how technology using a mobile app could help them improve their physical activity. This is a new demographic for our team and we feel very fortunate to work with such an incredible group!
Describe your role as a community innovator in this study. How will you work with your research partner to generate new knowledge and create wellness solutions for people affected by MS?
Our role is to provide digital design services (i.e., user-centred design) for this research study. The majority of this work will focus on defining the requirements and evaluating the general usability of the app. We will work closely with our research partners at SickKids Hospital to meet with participants as we complete the various design and usability assessments. This will help us create an app for youth with MS to improve their physical activity. This will ultimately contribute to improvements in their overall wellness. We will rely on the research partners to facilitate interactions with participants and help us understand the clinical management of this unique group.
What does wellness mean to you? Why do you think it is important to study approaches to wellness that will improve the health and quality of life of people affected by MS?
Wellness encompasses the physical, mental, and spiritual aspects of one’s life. It is important to consider the relationship between these aspects to improve quality of life and health. Given the chronic nature of MS, it is important to establish positive health behaviours early in life, including an active lifestyle. Therefore, it is absolutely necessary to study novel approaches to help youth with MS improve their physical activity. In turn, improved physical activity behaviours may help them improve their quality of life and health in order to live a fulfilling and successful life.
What are you looking forward to most in carrying out this study? What challenges do you anticipate?
We are looking forward to interacting with the young participants to help us create a worthwhile mobile app. Learning from participants and being guided by the amazing research partners at SickKids will strengthen the design process and ensure that we are on target with the end-users of the app. This will be absolutely critical to design an app for youth with MS. Some of the bigger challenges we may face include meeting the needs of a diverse population and ensuring that we are making an app that meets all the needs identified by the users. Logistically, trying to meet with different participants may also be a challenge – but thankfully technology can help facilitate these interactions!
Stay tuned for our next and last installment of this series!