A Qualitative Study of Exercise and Physical Activity (PA) Among Adolescents With Pediatric-Onset Multiple Sclerosis (POMS)

PURPOSE: Pediatric onset multiple sclerosis (POMS) accounts for up to 5% of all multiple sclerosis (MS) cases. Individuals with POMS often present with mental and physical fatigue, cognitive impairment, and depression. Concerningly, POMS is associated with persistently higher relapse rates compared with adult onset MS, and permanent disability occurs approximately 10 years earlier chronologically than adult onset MS. Such observations underscore the importance of early disease identification for initiating immediate treatment with therapeutic rehabilitation strategies. Physical activity has been identified as an important rehabilitation strategy for managing the manifestations of POMS. There is evidence that higher levels of physical activity are associated with lower T2 lesion volume, relapse rate, and fatigue in POMS. Unfortunately, there is evidence of low rates of physical activity participation in POMS (i.e., ∼10 minutes per day of moderate-to-vigorous physical activity), and those with POMS engage in less physical activity than healthy controls and youth with other demyelinating conditions. Of note, the existing literature regarding physical activity and POMS is sparse, and there is very limited insight regarding the lived experiences of POMS regarding physical activity, including perceptions of its benefits, barriers, facilitators, and promotion. The present study seeks to explore the perceptions and experiences of physical activity, and further, preferences for an intervention targeting physical activity among youth diagnosed with POMS.

DESIGN: We conducted a qualitative exploration of physical activity perceptions and experiences, and preferences for a physical activity intervention in 8 persons with POMS using semi-structured interviews and interpretative phenomenological analysis (IPA). We recruited youth between 10 and 17 years old through a local POMS facility who agreed to be recorded during an interview and were fluent in English.

METHOD: We used semi-structured interviews to collect data with 35 open-ended questions with a series of closed and open-ended probes for elaboration and clarification. We applied IPA to the data incorporating an iterative and reciprocal hermeneutic circle to maintain consistency. We implemented a relativist approach to quality assessment through substantive contribution, width, credibility, and transparency.

RESULTS: The participants believed physical activity would be beneficial and important, but further believed that it can often be boring and may worsen POMS symptoms. Participants described adequate symptom management, social support, time, and opportunity as facilitators of physical activity, and lack of social support, time, and opportunity as hindrances. The interviewees described that components of a future intervention should focus on education regarding specific exercises, outcomes, and safety during exercise, and provided opportunities for social engagement with other individuals with POMS.

CONCLUSION: This qualitative study is the first research regarding the perceptions and experiences of physical activity in POMS, and is an important step in crafting an understanding of physical activity behavior in POMS that serves to inform the development and delivery of physical activity behavioral interventions. Collectively, the group of adolescents with POMS provided rich information permitting a deeper understanding of the lived experience and perception of physical activity, along with information regarding preferences and desires for a future intervention targeting physical activity. This information will be essential for targeting physical activity as a health behaviour for optimizing quality of life and participation among persons with POMS.

References

Grover, S. A., B. Aubert-Broche, D. Fetco, D. L. Collins, D. L. Arnold, M. Finlayson, B. L. Banwell, R. W. Motl, and E. A. Yeh. "Lower Physical Activity Is Associated with Higher Disease Burden in Pediatric Multiple Sclerosis." [In Eng]. Neurology 85, no. 19 (Nov 10 2015): 1663-9.

Grover, S. A., C. P. Sawicki, D. Kinnett-Hopkins, M. Finlayson, J. E. Schneiderman, B. Banwell, C. Till, R. W. Motl, and E. A. Yeh. "Physical Activity and Its Correlates in Youth with Multiple Sclerosis." [In Eng]. J Pediatr (Oct 4 2016).

18. Smith, Jonathan A. 2016. "Interpretive Phenomenological Analysis in Sport and Exercise: Getting at Experience." Chap. 17 in Routledge Handbook of Qualitative Research in Sport and Exercise, edited by Brett Smith and Andrew Sparkes, 219–229. New York City: Routledge.

Sawicki, Carolyn, Stephanie Grover, Dominique Kinnett-Hopkins, Robert Motl, Marcia Finlayson, Jane Schneiderman, and E Ann Yeh. "Self-Efficacy and Functional Disability as Barriers to Physical Activity Participation in Pediatric Multiple Sclerosis (P4. 023)." Neurology 84, no. 14 Supplement (2015): P4. 023.