Multiple sclerosis (MS) is a lifelong condition affecting the brain and spinal cord. For some people, symptoms are mild, but others develop serious problems with their sight, movement and balance. People with severe MS may be unable to stand unsupported.
The Standing Up in Multiple Sclerosis (SUMS) trial was set up to find out whether people with severe MS would benefit from using a standing frame at home to stand up for longer periods. It explored a programme of regular self-managed use of a standing frame. The results showed that regular frame standing slightly improved motor function, and was feasible and cost-effective for the NHS to implement. Importantly, two in three participants wanted to keep the frames at the end of the trial so they could continue to use them.
The current study explored study participants’ day-to-day experiences. It showed that standing in the standing frame helped people with progressive MS feel more like their old selves and gave them a sense of normality and enjoyment. People were more able to participate in activities they valued, and they noticed improvements in both physical and psychological symptoms. They said that key factors in the success of the standing programme were support from a physiotherapist and recognition of the variable nature of their condition.
These findings indicate that this programme should be offered to people with progressive MS who have impaired mobility and difficulty standing unaided. The researchers say this evidence should be considered when national and local guidelines on mobility interventions for people with MS are updated.
What’s the issue?
More than 130,000 people in the UK are living with MS. The condition is caused when the body’s immune system mistakenly attacks the central nervous system, leading to a variety of potential symptoms such as problems with vision, movement, sensation or balance.
MS affects everyone differently. A person’s symptoms may come and go in phases or get steadily worse over time (progress). Many people with progressive MS will eventually rely on a wheelchair. Spending most of their day sitting down puts them at risk of other health problems, such as muscle wasting, as well as negatively affecting their emotional well-being and quality of life.
A standing frame allows people with limited ability to stand independently for extended periods. The device could help people with severe MS to increase their physical activity through regular supported standing.
The SUMS trial recruited 140 people with severe progressive MS from eight healthcare organisations in two regions (East Anglia; Devon and Cornwall). Participants all had their usual care but some were randomly allocated to receive, in addition, a home-based, self-managed standing programme. The programme involved two sessions at home with a physiotherapist. People were then given printed information, DVDs and web-based resources, and encouraged to stand three times a week. Use of the standing frame led to some improvements in people’s motor function and balance, and was feasible and cost-effective for the NHS to implement.
In the current study, some of the participants were asked in detail about their experience of using a standing frame in daily life. This gave a more complete understanding of the benefits and drawbacks of the intervention.
Twelve people with progressive MS, and eight standing assistants (who were mostly their spouses) were included. They kept audio diaries of their day-to-day experiences during the 36 week long trial.
Four overarching themes emerged from the transcriptions:
- ‘Feeling like the old me’. Standing helped people reconnect with their old, more able selves in a positive way. They enjoyed standing safely upright in the frame and the feelings that standing evoked. Some reported physical improvements which further changed their behaviour, for example prompting them to take part in social activities with family and friends. Standing gave them a sense of normality and control, which persisted throughout the trial even after the novelty of using the frame had worn off. One man described standing to give a speech at his daughter’s wedding, another was reminded of how surfing felt, and many reported on the importance of looking at others face to face.
- ‘Noticing a difference’. People perceived positive changes in activities such as walking, transfers, posture and sitting balance, and a wide range of MS symptoms. These improvements appeared to increase their confidence and enable them to engage more in everyday life. The researchers note that some of these improvements, such as in sitting balance, were not seen in the larger original study.
- ‘I want to do it right’. Initially some participants lacked confidence in using the frame. With increased practice, and support from the physiotherapist, their confidence grew. They became able to modify the standing programme to suit their own needs and manage difficulties that arose. Some had no side effects, but others had minor back and leg pains which often resolved as they got used to standing.
- ‘You have a good day, you have a bad day’. Participants said the fluctuating nature of their condition meant their enthusiasm for using the standing frame could change from day to day. They also had different expectations of the programme, and some struggled to balance their aspirations with the reality of their achievements.
Why is this important?
Simple interventions can make a huge difference to the lives of people with long–term conditions. The original trial found that a standing frame programme slightly improved motor function in people with severe MS. It was also cost-effective to implement.
This study adds to the understanding of people’s experiences with the standing frame programme. Participants described enjoyable experiences which had positive knock-on effects on other aspects of their lives. People who enjoy an activity are more likely to continue with it over the long term.
While some in the study were more hesitant, especially at first, the standing frame appeared to be a popular intervention which they continued to use throughout the trial.
Taken together, the studies indicate that the standing programme should be offered to anyone with MS who finds it difficult to stand and walk more than about 20 metres with sticks or a walking frame. They suggest it should be included when national guidelines on mobility for people with MS are updated.
Some people in the study would have valued more support when learning to use the frame. The researchers have compiled participants’ experiences in short videos which are freely available. They hope this will increase the confidence of others as they start to use a standing frame.
More research is needed to explore whether standing frames improve motor function and quality of life in people who are less severely disabled. Those who can walk 100 metres with a walking aid might also benefit.
It will also be important to investigate whether regular frame standing can lead to improvements in other health complications. Prolonged sitting and inactivity in people with MS is linked to constipation, muscle pain or ulcers.
You may be interested to read
The full paper: Dennett R, and others. “I’m in a very good frame of mind”: a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis. BMJ Open 2020;10:e037680
A paper reporting the results of the SUMS clinical trial: Freeman J, and others. 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
Free resources for both clinicians and people with MS about standing frames: Standing Up in Multiple Sclerosis (SUMS)
NICE clinical guideline [CG186] on diagnosing and managing multiple sclerosis in people aged 18 and over: Multiple sclerosis in adults: management.
Funding: This study is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit Programme.
Conflicts of Interest: The study authors declare no conflicts of interest.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.