Transitioning from Pediatric to Adult MS Care

Start Term
End Term
Funding Amount
$36,539
Geographic Region(s) / Province(s)
Ontario
Researcher(s)
Dr. E. Ann Yeh
Research Priorities
Cognition and mental health
Impact Goal(s)
Advance Treatment and Care

Summary:

  • Youth with multiple sclerosis (MS) often face high disease activity and an earlier transition to progressive disease. 
  • Dr. Ann Yeh and team will investigate how the transition from adolescence to young adulthood and independence is managed by people with MS aged 14-24 to identify the barriers, facilitators, and challenges faced in managing their MS. 
  • The findings of this research will help identify how to best support this young and vulnerable population during a major transition period in their life in order to improve health outcomes.

Affiliation(s): The Hospital for Sick Children

Project Description: 
Youth with MS show higher disease activity and earlier transition to a progressive disease compared to those who have adult-onset MS. Youth with MS have to manage their disease while growing up and experiencing life changes (i.e., moving out, going to university, getting a job, starting a family). It is therefore important to understand how to best support this large and vulnerable population in the management of their MS over time.

Dr. Ann Yeh and team aim to describe how youth with MS who are transitioning to adulthood and adult care experience self-management, including which areas of self-management is important to them and the challenges they are facing. The team will interview 26 youth with MS ages 14 to 24 and 10 parents. The interview responses will be analyzed to understand the barriers that youth with MS face in the management of their disease. The researchers have engaged youth with MS in the development of the interview questionnaire and study design and will also engage study participants and their families as advisors and reviewers of the interview results.

Potential Impact: The findings of this research will provide a better understanding of how youth with MS manage their disease over time. This understanding will help guide the development of resources and programs to support youth with MS in their transition to adult care to help improve health and social outcomes (i.e., education experience, employment).

Project Status: In Progress