“ANYTHING WOULD BE A WIN IF YOU’RE STRUGGLING.” – EXPLORING EXERCISE AND PHYSICAL ACTIVITY IN PEOPLE LIVING WITH IDIOPATHIC HYPERSOMNIA

Idiopathic hypersomnia (IH) is a debilitating sleep condition characterised by excessive daytime sleepiness. The potential to moderate symptoms through lifestyle factors such as physical activity has not been explored, and current management focuses on medication. Exercise reduces fatigue and increases energy in the general population, and while some publications note physical activity as a potential avenue to manage symptoms of IH, there is no specific evidence related to exercise in this condition. The aim of this project was to explore the experiences of people living with IH in relation to: self-efficacy and exercise, exercise for symptom management, diagnosis related sources of information to support exercise, perceived ideal exercise prescription and the interaction between exercise and current management strategies and treatment approaches. Qualitative data was collected through semi-structured interviews with 14 participants. This was transcribed and analysed using a modified codebook analysis to construct overarching themes and subthemes. Three overarching themes were constructed. The first theme described a lack of exercise advice, outlined the interaction between exercise and condition management strategies and symptoms and outlined the diverse range of activities people with IH engage with. The second theme explored the positive and negative factors of exercise self-efficacy, as well as reported barriers and facilitators of exercise. The third theme “A consumer-led exercise prescription” details a best practice (FITT) potential exercise prescription informed by the opinions and experiences of people with IH. This is the first study exploring exercise and physical activity in people living with IH. It provides valuable insight regarding potential future exercise interventions for clinicians, future researchers and people living with IH.