John Kendrick, from Sparkwell, near Plymouth, has progressive multiple sclerosis, and never thought he’d be able to walk any distance again. Now, thanks to taking part in a clinical trial at the University of Plymouth, he can reflect on the ‘best experience’ of walking his daughter down the aisle on her wedding day.
The results of the national trial, called Standing Up in Multiple Sclerosis (SUMS), have been published in The Lancet Neurology, and show how the standing frame intervention used by John has significantly improved the lives of many people in the advanced stages of MS.
|MS patient John Kendrick (from 5:08) and Professor Jenny Freeman talk about the study.|
|Standing up in Multiple Sclerosis – how a standing frame can improve life for people with MS. Professor Jenny Freeman from the University of Plymouth and MS patient John Kendrick explain how a new study has shown positive results for people with secondary progressive multiple sclerosis. University of Plymouth. Youtube May 30, 2019|
|See the Standing Up in Multiple Sclerosis (SUMS) web page|
This is one of the first physiotherapy interventions proven to be effective in this group of people and, as it was tested within an NHS context, it’s something that could be rolled out almost straight away.
A new study has shown that people in the advanced stage of multiple sclerosis (MS) experience significant improvements in movement and balance thanks to a specialised standing frame.
Led by the University of Plymouth and published in The Lancet Neurology, the study in people with progressive MS also showed that the intervention appeared cost-effective, leading researchers to conclude that it could be routinely implemented within MS care throughout the UK.
Around 110,000 people in the UK have MS; a lifelong condition that affects the central nervous system (the brain and spinal cord) and often leads to increasing disability.
The study, called Standing Up in Multiple Sclerosis (SUMS), was funded by the National Institute for Health Research (NIHR) Research for Patient Benefit Programme, and sponsored by University Hospitals Plymouth NHS Trust.
|What is progressive MS?|
Progressive MS often follows an earlier relapsing remitting stage, with the majority of people in the later stage experiencing walking difficulties, along with poor balance and co-ordination. As a result, many people spend much or all of their day sitting, which can lead to problems such as muscle weakness from disuse, pain, constipation, loss of movement at joints and pressure ulcers.
|What does the standing frame do?|
The Oswestry standing frame is designed to help slow the development of these problems in people in the more advanced stages of the condition, by enabling them to regularly stand and carry out strengthening and balance exercises in a supported position, with the help of a friend or family member if needed.
|What did the study involve?|
The nationwide study saw 71 people with the condition randomly allocated to undertake the standing frame programme over 20 weeks, alongside their usual care. Another 69 participants were randomly allocated to their usual care for the same time period and did not use the standing frame.
The intervention consisted of two home-based physiotherapy sessions (60 minutes each) to set up the standing programme, supported by six follow-up telephone calls. Participants were asked to stand for 30 minutes, three times weekly, over 20 weeks, with encouragement to continue for 36 weeks and beyond, although no further physiotherapy support was provided.
|What did the results show?|
Results showed that, on average, people who used the standing frame scored more highly on an assessment of their movement and balance function, as objectively assessed by a physiotherapist.
On average the intervention costs around £800, so the use of the standing frame also appeared to be cost-effective according to the criteria set out by The National Institute for Health and Care Excellence (NICE). This is an important factor when considering new interventions for use in the NHS.
In addition, participants assigned to the standing frame intervention reported experiencing personal improvements in their quality of life, such as their ability to balance and move about, reduced stiffness in their legs, and improved bladder and bowel control.
Source University of Plymouth
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, Prof Jennifer Freeman PhD, Wendy Hendrie PhD, Louise Jarrett PhD, Annie Hawton PhD, Andrew Barton MSc, Rachel Dennett BSc, Ben Jones MSc, Prof John Zajicek PhD, Siobhan Creanor BSc. The Lancet Neurology. Volume 18, Issue 8, P736-747, August 01, 2019. PDF
Standing up in multiple sclerosis (SUMS): protocol for a multi-centre randomised controlled trial evaluating the clinical and cost effectiveness of a home-based self-management standing frame programme in people with progressive multiple sclerosis, Freeman JA, Hendrie W, Creanor S, Jarrett L, Barton A, Green C, Marsden J, Rogers E, Zajicek J. BMC Neurol. 2016 May 5;16:62. doi: 10.1186/s12883-016-0581-8. Full text. PDF
A self-management programme to reduce falls and improve safe mobility in people with secondary progressive MS: the BRiMS feasibility RCT, Gunn H, Andrade J, Paul L, Miller L, Creanor S, Stevens K, Green C, Ewings P, Barton A, Berrow M, Vickery J, Marshall B, Zajicek J, Freeman J. Health Technol Assess. 2019 Jun;23(27):1-166. doi: 10.3310/hta23270. Full report
Balance Right in Multiple Sclerosis (BRiMS): a guided self-management programme to reduce falls and improve quality of life, balance and mobility in people with secondary progressive multiple sclerosis: a protocol for a feasibility randomised controlled trial, Gunn H, Andrade J, Paul L, Miller L, Creanor S, Green C, Marsden J, Ewings P, Berrow M, Vickery J, Barton A, Marshall B, Zajicek J, Freeman JA. Pilot Feasibility Stud. 2017 Jul 27;4:26. doi: 10.1186/s40814-017-0168-1. eCollection 2018. Erratum in: Pilot Feasibility Stud. 2017 Oct 24;3:48. Full text
|“Feeling like the old me.” In this short film people share the enjoyment they experienced from standing in the frame and some describe the opportunity it provided to reflect on their past and consider their present identity. University of Plymouth. Youtube Jul 27, 2018|
Can standing frames improve mobility in progressive MS? in Multiple Sclerosis Trust
Multiple sclerosis: Dad walks daughter down aisle after standing frame study in BBC News