PEACH - the fruits of participation and environment in children with multiple sclerosis
Paul Yoo is a postdoctoral fellow in the Pediatric Neuroinflammatory Disorders Program at The Hospital for Sick Children, working under the supervision of Dr. E. Ann Yeh, the director of both the MS and Neuroinflammatory Disorders Program and the Fellowship Program. He provides a summary of his research findings, which were supported by the Edwin S.H. Leong Centre for Healthy Children Studentship Award.
Multiple Sclerosis (MS) is a chronic autoimmune disorder characterized by recurrent inflammation and neurodegeneration. Upwards of 75% of children with MS report experiencing symptoms of depression, fatigue, and/or cognitive impairment. Therefore, strategies that can reverse or prevent these consequences are needed.
Interestingly, participation, defined by the World Health Organization as “involvement in life situations,” has been found to be beneficial for the physical and mental health of children. However, little is known about the relationships between participation and health outcomes in children with MS, and the environment in which they live. Therefore, our goal through the Participation, Environment, And Clinical Health outcomes (PEACH) project is to study the relationships between participation in home, school and community life, the environment, and health outcomes in children with MS.
To achieve this goal, we are recruiting consecutive children with MS, aged 10 to 17 years old, through The Hospital for Sick Children MS and Neuroinflammatory Disorders Clinic. Participation in home, school and community life, and perceived environmental barriers, are being measured using validated patient-reported outcome measures. Depression, anxiety, quality of life, and fatigue are also being measured using clinically validated measures along with self-reported gender, ethnicity, and family income. Importantly, a subgroup of children with MS were recruited for focus groups where they discussed activities in which they participate, with whom and where, and facilitators and barriers that promote or hinder their ability to participate. Transcribed texts were deductively analyzed using the Centre’s Conceptual Framework for Child Flourishing in Canada.
Preliminary analyses have revealed several key findings in children with MS. Higher levels of participation in home, school, and community life were associated with lower perceived environmental barriers, as well as lower levels of depression and fatigue. Conversely, higher perceived environmental barriers were linked to increased depression, anxiety, fatigue, and lower quality of life. Children with MS also identified factors that facilitated their participation, such as engaging in activities with friends, having facilities and parks closer to their homes, and participating in activities they enjoy. However, symptoms related to their MS diagnosis (e.g., fatigue, weakness), fear of peer judgment, and school responsibilities were reported as barriers to participation.
Our work studies the construct of participation in a marginalized group – children with an “invisible” chronic neurological illness – and focuses on understanding individual outcomes and experiences shaped by environments. It also aims to study the intersection of disability/chronic illness, gender, sex, and ethnicity. This study will contribute to evidence on participation as a construct and its relationships with health outcomes in children with MS. It will act as preliminary work for the development of future interventions that aim to enhance participation in home, school, and community life to mitigate symptoms and promote health and wellbeing of children with chronic illnesses.
The Edwin S.H. Leong Centre for Healthy Children, through the Studentship Award and through its mission and theoretical underpinnings, has been a pivotal and substantial support that helped shape the PEACH project – for this I am truly grateful.
