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PICTURE: John Kendrick, who participated in a clinical trial at the University of Plymouth, walks his daughter Nicola in the alley on the day of her wedding.
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Credit: John Kendrick
A new study has shown that people with advanced MS (Multiple Sclerosis) experience significant improvements in movement and balance through a specialized vertical frame.
Led by the University of Plymouth and published today in The neurology of lancetthe study on people with progressive MS also showed that the intervention appeared cost-effective, leading researchers to conclude that it could be systematically implemented as part of MS treatment in the UK.
In the UK, about 110,000 people have MS; a chronic disease that affects the central nervous system (the brain and spinal cord) and often leads to increasing disability.
The study, Standing Up in Multiple Sclerosis (SUMS), was funded by the NIHR's National Institute for Health Research's Patient Advocacy Program and is sponsored by the University Hospitals Plymouth NHS Trust. .
What is progressive MS?
Progressive MS often follows a period of recurrent remittance, with the majority of people with advanced stage having walking difficulties, poor balance and poor coordination. As a result, many people spend most of their day sitting, which can lead to problems such as muscle weakness due to inactivity, pain, constipation, loss of joint mobility, 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 at a more advanced stage of the disease by allowing them to stand up regularly and perform strengthening and balance exercises. in a sustained position, with the help of a friend or family member if necessary.
What was the study?
The nationwide study found that 71 people with this condition were randomly badigned to the implementation of the continuing education program above 20 weeks, along with usual care. Sixty-nine other participants were randomly badigned to their usual care for the same period and did not use the permanent frame.
The intervention consisted of two home physiotherapy sessions (60 minutes each) to set up the ongoing program, along with six follow-up phone calls. Participants were asked to stand for 30 minutes, three times a week, for 20 weeks, with the encouragement to continue for 36 weeks or more, although no other physiotherapy support was provided.
What do the results show?
The results showed that on average, people who used the standing frame got a higher score when evaluating their movement and balance functions, objectively evaluated by a physiotherapist.
The intervention costs on average around £ 800, so that the use of the permanent framework also seemed cost-effective against 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 badigned to the standing intervention reported personal improvements in their quality of life, such as their ability to balance and move, a reduction in leg stiffness and improved control of the bladder and intestines.
The story of John
John Kendrick, 67, from Sparkwell near Plymouth, Devon, was badigned to stand-up and, after years without being able to move very far, was able to walk his daughter in the alley on the day of her wedding.
He said: "There is absolutely no doubt in my mind that without the standing frame, I would not have been able to take my daughter to church to marry her husband. using a crutch to help me and of course holding her too, but I'm so proud of having done so.
"With secondary progressive MS, my mobility has decreased and I am starting to lose any sensation in my right hand, but the standing frame, which I continue to use, has helped me stay mobile."
The story of Nick
Nick Jarvis, 43, of Norwich, was also badigned to the standing intervention and described how it had changed his life.
"I had briefly used the standing frame during physiotherapy sessions after diagnosing multiple sclerosis in 2011, but several years later I had the opportunity to participate in the SUMS study." , which forced me to use the standing frame at home.It was a bit tedious at first because I had not really lifted it for a long time, but it gradually became an extremely positive part of my day.
"Whether watching TV or playing a game on my phone, I stayed busy while I was in the setting, and I was going from 90 minutes a week to 90 minutes a day. walking home 70% of the time, with crutches or hanging on the worktop, while I had never walked at all before using the frame.
"I feel more positive, my heart is stronger and my mood is so much better, it really changed my life, so I hope more people like me will benefit in the future."
What the authors of the study say
The study's lead author, Jenny Freeman, professor of physiotherapy and rehabilitation at the University of Plymouth, said: "Mobility is a major concern for people with MS – not just with regard to to stay upright and walk, but also, for example, to move in. Nearly 25% of people with MS eventually become wheelchair dependent, but very little research has been done on how to preserve and improve the mobility of severely disabled people, or the effectiveness of the standing frame for this group of patients.
"This is one of the first physiotherapy interventions that has been proven effective in this group of people and, as tested in the context of the NHS, it could be deployed almost at once."
Wendy Hendrie, a physiotherapist and researcher at the Norfolk Community Trust and Care Trust, added: "Professor Dame Sally Davies, Chief Medical Officer, recently stated that it was essential to maintain the activity of severely disabled people to avoid the complications badociated with a sedentary lifestyle.This study shows that people severely disabled by multiple sclerosis are able to improve their motor function and balance through a regular work setting and, most importantly, are able to manage the long-term intervention themselves at home with the help of their family or caregivers.
"The fact that the results show a significant improvement for people with MS is fantastic, and the personal comments of study participants show that this work could change the lives of people with progressive MS across the country." "
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The comprehensive study entitled Evaluating a Permanent Home Program in People with Progressive Multiple Sclerosis (SUMS): A Pragmatic, Multicenter, Randomized, Controlled Trial and Cost-Effectiveness Analysis. It is available from 19:00 EST on Wednesdays. July 10 in the newspaper The neurology of lancet.
It was conducted from 2015 to 2018 by the University of Plymouth; Norwich MS Center; Royal Devon and Exeter NHS Foundation Trust; The Peninsular Clinical Trials Unit at the University of Plymouth; the University of Exeter; the University of St Andrews and with support from the NIHR South West Peninsula Clinical Research Network.
The patients were recruited from the Torbay and South Devon NHS Foundation Trust sites; Northern Devon Healthcare NHS Trust; Livewell Southwest; Royal Devon and Exeter NHS Foundation Trust; Cornwall Partnership NHS Foundation Trust; Norfolk Community NHS Trust; and CIC from East Healthcare Community Healthcare.
To learn more about the study, visit the SUMS website https: /
Watch a video about the study on the Plymouth University YouTube page https: /
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