Author(s): CONSTERDINE, A., CHAPMAN, K., COLLETT, J., DUDA, J.L., DAWES, H., Institution: LIVERPOOL JOHN MOORES UNIVERSITY, Country: UNITED KINGDOM, Abstract-ID: 2561

INTRODUCTION:
Demyelinating syndromes (DS) are chronic, relapsing, autoimmune conditions characterised by inflammation and damage to the nerves in the brain and central nervous system). Although DS disorders such as Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorder (NMOSD) are prevalent in the adult population, paediatric onset is rarer and much less studied. These lifelong conditions have severe implications for quality of life, impacting on school performance and social activities, as well as physical, emotional and psychological well-being. Two particularly concerning aspects of these conditions are that they are often accompanied by drastic weight changes and alterations to body composition.
METHODS:
16 young people with DS took part in semi-structured interviews, conducted virtually and audio recorded. Questions related to how the condition has impacted their lifestyle, diet, and physical activity levels. Inductive thematic analysis was employed for data analysis. Rigour and credibility were established through detailed immersion and prolonged engagement of the data, multivocality, member reflections, reflexivity and inter-researcher debriefing.
RESULTS:
Six overarching themes were identified: 1) the influence of the diagnosis on the young person, 2) the implication of the treatment, access to services and effects of steroids, 3) the ways in which the young person mediated the effects of their condition through changes to their diet, physical activity/lifestyle and vice versa, 4) the impact of sleep quality on fatigue levels, 5) a change of identity associated with living with a debilitating lifelong condition, and 6) the influence of family.
CONCLUSION:
Diagnosis and treatment produced a multitude of intersecting effects on the young people interviewed. Patients fell into three distinct groups, namely some who were very active prior to diagnosis and were highly motivated to strive for activity maintenance post diagnosis. Some patients were not physically active either pre or post diagnosis and struggled to manage their disease course. A third group were moderately active before diagnosis, and then struggled to maintain activity levels or weight after. Some patients in the latter two groups underwent an epiphany leading to a dramatic change in their lifestyle and physical activity levels. The data suggested a range of both facilitators and barriers to being physically active with associated behavioural or emotional responses to the diagnosis, treatment and effects of the conditions. Some of these included the effects of family on diet and lifestyle, peer support, motivational disposition, fatigue, stress, fear of physical activity, alienation from their own bodies, fear of exercise exacerbating symptoms, or access to relevant resources or sources of information. Those who maintained or improved their physical activity levels, were able to manage their disease course more adroitly, taking ownership of their condition, with an improvement in well-being.