Welcome to the SUMS Study website. SUMS is a multi-centre randomised controlled study to assess the effectiveness of a home-based self-management standing frame programme in people with progressive MS.
This website provides a range of information about the study, and resources both for people affected by MS and physiotherapists, which we hope you will find helpful. The content of this website will be updated to keep you informed of our progress.
Data collection was completed in December 2017. The results have been presented at a number of patient forums across the South West and East Anglian Regions of the UK, and at major scientific conferences across Europe. Articles are in the process of being written.
If there is additional information that you would find helpful please let us know via email so that we can improve the site for everyone.
Last updated November 2018.
Standing upright is highly valued by most individuals, both psychologically (e.g. enabling eye to eye interaction) and physiologically (e.g. maintaining muscle strength). 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 minimise the physical complications arising from prolonged immobility and increase feelings of well being.
Like those with SCI, many people with severe Multiple Sclerosis (MS) cannot stand independently, often developing disabling complications as a result of immobility. Two pilot studies have demonstrated that such people can obtain similar benefits to those with SCI by using a standing frame. However, in many areas frames are not issued due to limited scientific evidence. This study aimed to provide robust evidence about their efficacy.
Many people with MS develop severe walking problems and consequently spend much of their day sitting down. The associated secondary problems (e.g. pressure sores, contractures, muscle wasting) 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, often incurring expensive travel costs. We wished to find out whether using a standing frame at home may offer a solution which reduces the economic and social costs for the patient and NHS.
The SUMS study involved 140 severely physically impaired people with MS. Participants were randomly allocated to either a home-based, self-management standing programme (with advice and support) along with their usual care or to usual care alone. Participants were asked to stand three times weekly over 20 weeks. A range of outcomes, including motor function and balance, was measured at intervals throughout the study and compared between the two groups.
How were people with MS involved in developing this research study?
This topic was first identified as a result of qualitative research by Dr Wendy Hendrie (SUMS Study research team member) who undertook 27 in-depth interviews with people with progressive MS who had participated in a standing programme. These interviews, which explored the feasibility and usefulness of a home-based standing programme, identified that people with MS highly value supported standing as a self-management intervention but found it difficult to access within the NHS, in part because of insufficient research evidence justifying its use.
The MS Society/James Lind Alliance partnership identifies ten key research priorities important to people with MS, their carers and professionals. Our study contributes directly to five of these priorities, emphasising the importance of this topic.
Having identified this topic we began to work with people with MS to design the study. We undertook two discussion groups with 12 people with progressive MS to define the research question and develop and critique the study design. All of these people had significant disability. Seven regularly used a standing frame and five did not. We listened to their views about a wide range of issues (such as the acceptability of randomisation, the outcome measures to be used, and feasibility of the standing frame intervention) and made some changes to the study design. All in all there were three rounds of comments and changes until we finalised the study design
Information on using the Oswestry Standing Frame
These are some resources that may be useful to therapists and people with Multiple Sclerosis (MS).
How to use an Oswestry Standing Frame
A video for participants and health professionals
Woman using Oswestry Standing Frame in her home
Exercising in the Oswestry Standing Frame
A video for participants and health professionals
When more help is required to stand in the Oswestry Standing Frame
A video for participants and health professional
Professor Jenny Freeman (Chief Investigator – Physiotherapist), University of Plymouth
Doctor Wendy Hendrie (Principal Investigator – Physiotherapist), Norfolk Community Health and Care Trust/University of Plymouth
Doctor Louise Jarrett (Principal Investigator – MS Nurse Specialist), Royal Devon and Exeter NHS Trust
Robert Kinsman (Lay person)
Andy Barton (Methodologist), University of Plymouth
Siobhan Creanor (Trial Statistician), University of Plymouth
Doctor Anne-Marie Hawton (Health Economist), University of Exeter
Professor Jonathan Marsden (Professor in Rehabilitation), University of Plymouth
Professor John Zajicek (Consultant Neurologist)
Stephen Hooley (Research Assessor – Physiotherapist), Norfolk Community Health and Care Trust
Rachel Dennett (Research Assessor and Study Coordinator), University of Plymouth
This three year study has been funded by a grant from the National Institute for Health Research, Research for Patient Benefit Programme, Ref number PB-PG-1013-32047.
Trial Sponsor: Plymouth Hospitals NHS Trust
Ethical approval has been gained by: NRES Committee SouthWest – Frenchay (Rec Ref: 15/SW/00)
International Registered Trial Number (ISRCTN): 30081
Sites involved in this study:
- January 16 newsletter
- March 16 newsletter
- June 16 newsletter
- September 16 newsletter
- November 16 newsletter
- February 17 newsletter
- May 17 newsletter
- September 17 newsletter
- January 18 newsletter
- Enhancing physical activity and quality of life in people with severe physical disability: Could standing frame programmes help?
- SUMS study summary of results from the MS Trust Conference 2018
- RealTalk MS, a podcast hosted by Jon Strum. Episode 99, talks about the SUMS study results, as well as some other interesting areas of MS research.
- Access the results of the qualitative component of the SUMS study, published open access in BMJ Open
- Access the results of the SUMS study, published open access in the Lancet Neurology Vol 18, Issue 8, August 2019, pages 736-747.
SUMS Protocol BMC Neurology 2016
Some interesting articles evaluating the use of the standing frame.
Email Standing Up in Multiple Sclerosis (SUMS) at SUMSstudy@plymouth.ac.uk