SUMS: Standing up in people with multiple sclerosis

Other measures (1)

Background and study aims Multiple sclerosis (MS) is one of the most common diseases of the central nervous system (brain and spinal cord). Healthy nerves are coated in a fatty casing (myelin sheath) which helps messages to travel quickly and smoothly along nerves. When a person is suffering from MS, the immune system, which normally helps to protect against infection, attacks the myelin sheath, stripping it from the nerves (demyelination). This demyelination means that messages cannot travel along the nerves effectively causing a range of disabilities, such as walking problems and immobility. Being able to stand upright is highly valued by most people, both mentally and physically. Standing frames are commonly used by people with spinal cord injury (SCI) who are unable to stand unaided. These frames provide support to enable even severely disabled patients to stand safely. Regular use has been shown to reduce complications of immobility (such as pressure sores and muscle wasting) and boost feelings of wellbeing. Many people with MS develop severe walking problems and so spend much of their day sitting down. The associated complications impact on quality of life and result in increased healthcare needs. These problems can be minimised if physical activity is increased, however without easy access to a frame, people must travel to a rehabilitation/MS centre to stand which can be both expensive and time consuming. Using a standing frame at home may offer a solution which reduces the economic and social costs for the patient and NHS. The aim of this study is to test the effectiveness of a home-based standing programme with a frame in people who are severely disabled by their MS. Who can participate? Adults with MS who require assistance to walk more than 20 metres or who are restricted to a bed or wheelchair. What does the study involve? Participants are randomly allocated to one of two groups. Participants in the first group receive two, home-based, hour-long therapy sessions, during which time they are taught how to use the standing frame, followed by six 15-minute telephone consultations. The participants are encouraged to stand in the frame for 30 minutes, three times a week. In order to offer further support, participants are given user-friendly information leaflets and DVDs. Participants in the second group continue to receive usual care. At the start of the study and then again after 20 and 36 weeks, participants in both groups complete a number of questionnaires and assessments in order to test if their motor (movement) abilities and quality of life have improved. What are the possible benefits and risks of participating? Participants may benefit from an increased level of physical activity and improvements to movement and mood as a result of regularly standing in the frame. Risks of taking part are small but some participants may experience some increased fatigue, muscle stiffness or soreness because muscles that may not have been moved in a long time are being used. Where is the study run from? Peninsula Allied Health Centre (Plymouth University) and at least 30 other health centres catering for people with MS across Devon, Cornwall and East Anglia (UK) When is the study starting and how long is it expected to run for? September 2015 to March 2017 Who is funding the study? National Institute for Health Research (UK) Who is the main contact? Dr Jennifer Freeman jenny.freeman@plymouth.ac.uk