Physical activity and sedentary behaviour in Fabry disease

Fabry disease is a lysosomal storage disorder (inherited metabolic disorder). Despite the pharmacological treatments available to adults with Fabry disease, many individuals continue to experience debilitating symptoms in multiple organs, like heart enlargement, severe neuropathic pain, and progressive kidney impairment leading to renal failure. The physical symptoms associated with Fabry disease can have a profound negative impact on an individual’s mental health and quality of life. Therefore, the development of a non-pharmacological intervention could provide an effective addition to the current management of Fabry disease.

This PhD project aims to develop and evaluate a physical activity and sedentary behaviour intervention focused on enhancing mental health and quality of life in adults with Fabry disease.

• The first study will determine the association of physical activity and sedentary behaviour with mental health and quality of life in adults with Fabry disease. Participants will wear an activity monitor on their thigh for seven days, in addition to completing mental health and quality of life questionnaires.
• The second study involves co-designing a physical activity and sedentary behaviour intervention tailored to the needs of adults with Fabry disease. Focus groups are being conducted with adults with Fabry disease and individuals who support them (e.g. family members, friends, members of staff at the MPS Society). Additionally, healthcare professionals who have experience in supporting adults with Fabry disease will be interviewed. Once the focus groups and interviews are complete, we will conduct participatory workshops to develop and finalise the physical activity and sedentary behaviour intervention.
• The third study will be a mixed-methods randomised controlled trial. Adults with Fabry disease will be randomised into either the co-designed intervention group or the control group, for a duration of 3 months. The feasibility, safety and acceptability of the co-designed intervention will be explored.

If deemed feasible, safe, and acceptable, the intervention could be subsequently tested in a full-scale trial. If shown to be effective, this intervention could help adults with Fabry disease improve their physical activity levels, reduce their sedentary behaviour, and enhance mental health and quality of life.

Meet the Principal Investigator(s) for the project

Dr Daniel Bailey - Dr Daniel Bailey is a Senior Lecturer in Sport, Health and Exercise Sciences in the Division of Sport, Health and Exercise Sciences, Department of Life Sciences. He is Co-Director of the Centre for Physical Activity in Health and Disease after previously establishing and leading the Sedentary Behaviour, Health and Disease Research Group. Dr Bailey's research investigates the relationship between sedentary behaviour and chronic health conditions, with a particular focus on non-communicable disease. This research includes the epidemiology of sedentary behaviour and associations with non-communicable disease risks, controlled laboratory studies examining the acute effects of breaking up prolonged sitting on cardiometabolic biomarkers, and the development and evaluation of interventions to reduce sedentary behaviour and increase physical activity in a range of population groups at risk of adverse health such as people with Type 2 diabetes, office workers, individuals with a spinal cord injury, and older adults with frailty. Dr Bailey has been awarded multiple research grants from funding bodies and industry partners to support his research and has published a large number of research articles in his field of research. He has delivered multiple conference presentations and invited talks across the UK and Europe and was Technical Advisor for the Qatar National Physical Activity Guidelines 2nd edition, 2021. Dr Bailey is Deputy Chair of the British Association of Sport and Exercise Sciences (BASES) Physical Activity for Health Division and is a member of the BASES conference planning group. Dr Bailey was also a member of the scientific global leadershop committee for the 8th International Society for Physical Activity and Health (ISPAH) Congress. Dr Bailey has a wealth of experience teaching physical activity, sedentary behaviour and health topics at undergraduate and postgraduate level and uses innovative teaching approaches in his practice including research-informed teaching, bleneded and authentic learning, and flipped classrooms.

Project last modified 29/04/2024