This study set out to test the benefits of regular home-based standing combined with strengthening and balance exercises for people with progressive MS.
People with progressive MS with severe walking problems (122 people) were recruited through NHS clinics and therapy centres in Devon, Cornwall and East Anglia. One half were assigned to the standing frame group in addition to their standard care, the other half continued with standard care alone for 20 weeks.
A standing frame was delivered to the home of those in the standing group and set up by a physiotherapist who also provided instructions on how to combine exercises while standing. Participants were asked to stand for at least 30 minutes, three times each week for 20 weeks and keep a diary of how often and for how long they used the frame.
Mobility was assessed at the beginning of the study and after 20 and 36 weeks using a scale which measures the use of legs and trunk and the ability to do movements such as rolling over in bed.
At week 36, people in the standing group had a significant improvement in mobility score which was even greater when allowing for the amount of time that people had been standing.
The standing frame group also showed improvements in other measures including the range of movements in hip and ankle joints and mental well-being. As might be expected, short-term muscle and joint pain was more common in the standing frame group.
The researchers concluded that regular use of a standing frame can improve mobility in people with severe progressive MS.
People with progressive MS can develop severe walking problems and spend much of the day sitting down. This can lead to further problems such as muscle weakness and wasting, pressure sores, constipation and depression and increase the risk of other health problems such as heart disease.
Regular supported standing using a frame at home might be one way to reduce these complications as well as increase feelings of well-being. Small studies have shown promising results, so this study set out to test in detail the benefits of regular home-based standing combined with strengthening and balance exercises while standing.
How this study was carried out
People with progressive MS with severe walking problems (EDSS 6.5 to 8.0) (122 people) were recruited through NHS clinics and therapy centres in Devon, Cornwall and East Anglia. One half were assigned to the standing frame group in addition to their standard care, the other half continued with standard care alone for 20 weeks.
A wooden standing frame was delivered to the home of those in the standing frame group. A physiotherapist initially made two home visits to set up the standing frame and provide instructions on how to combine strengthening and balance exercises while standing. After the set-up sessions, the physiotherapist made six follow-up telephone calls to encourage continued use of the standing frame. Participants were asked to stand for at least 30 minutes, three times each week for 20 weeks and keep a diary of how often and for how long they used the frame.
Mobility was assessed at the beginning of the study, at 20 weeks and at 36 weeks, using the Amended Motor Club Assessment (AMCA) a measure which records leg and trunk function and includes the ability to do movements such as roll over in bed, stand up from sitting, as well as balance when sitting and standing.
When planning the study, the researchers set a 9 point increase in the AMCA score as indicating a meaningful improvement. At week 36, people in the standing group had an improvement of 4.7 points. Analysis of the diaries showed that not all participants stood for the recommended amount of time. When this was accounted for, an AMCA score of 9 was achieved. People who stood for significantly longer than the recommended time did not do significantly better, suggesting there was a maximum benefit that could be obtained.
The standing frame group also showed improvements in other measures including the range of movements in hip and ankle joints and quality of life.
As might be expected, short-term muscle and joint pain (lasting less than seven days) was more common in the standing frame group (41% in standing frame vs 22% in standard care group). No other side effects were associated with the use of the standing frame.
The results show that regular use of a standing frame can improve mobility in people with severe progressive MS. An economic analysis suggested that the combined cost of the frame and health professional time would fall within the threshold for cost effectiveness of NHS treatments.
The researchers discuss the pre-set target of a 9 point increase In the AMCA score. This might consist of someone regaining the ability to balance when sitting to dress (3 points), transfer independently (3 points) and stand without having to use their hands for balance (3 points). The researchers acknowledge that, in fact, any one of these improvements could represent a meaningful change for an individual.
An accompanying editorial notes the high quality of this study and suggests that a key element in the success of the study was the close involvement of experienced physiotherapists, providing instructions, guidance and encouragement. The editorial concludes that the results show that some aspects of loss of mobility can be reversed and that treatments such as home-based standing can maintain or even restore lost abilities.
Freeman J, Hendrie W, Jarrett L, et al.
Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis.
Lancet Neurology 2019;18(8):736-747.
Ploughman M
Restoring function in progressive multiple sclerosis.
Lancet Neurology 2019;18(8):711-712.
More about standing frames
For more information about standing frames and how to get one, visit the Standing Up in MS (SUMS) study website.
It may be possible to obtain a standing frame through the NHS. The study website includes a part-completed equipment form (PDF, 405KB) which can be adapted to make the case for purchase of a standing frame.