Understanding self-management support programmes
Self-management support (SMS) is a care programme for people living with long-term conditions. It helps people manage and take control of their physical and mental health around their condition. Programmes usually provide tools, resources, and guidance to help you make decisions about your care, set goals, and develop skills to cope with the challenges of your condition. The aim is to better your ability to manage your health effectively, improve your quality of life, and to reduce the impact of your condition on your daily activities.
So far, not much has been done to look at SMS programmes in people with muscle wasting conditions. As these conditions are progressive and unpredictable, it has proven more difficult to develop such programmes. This has shown the need for different types of self-management set ups for different individual needs.
An SMS programme developed around different people’s individual needs, called Bridges, was first developed for people managing their lives after a stroke. It was thought this programme had the potential to be used in muscle wasting conditions. In January 2020, a programme called Neuromuscular Bridges (NM Bridges) was launched.
NM Bridges SMS programme
The programme is based on the idea that personal experiences, the actions of others, and the environment can affect how people take care of their health. It focuses on building patients' confidence and includes special training for healthcare professionals. This training teaches them how to communicate better, use helpful techniques, and create an environment where patients feel supported.
The programme also involves creating useful resources, such as patient workbooks and a digital app. These resources, called Adapting to life with a neuromuscular condition, have stories, tips, and space for the participants to track their progress, with the goal to make the programme fit well with what they need.
Study of self-management support in neuromuscular conditions
We funded a study by a PhD student at the time, now Dr Laurence Lee, and his supervisor Dr Gita Ramdharry from University College London to explore how possible and easy it would be to have NM Bridges for people with muscle wasting conditions in specialist clinics. It was important to know if this service would be acceptable to clinicians as well as participants, and the level of demand for it. The researchers monitored the service at Queen Square Centre for Neuromuscular Diseases to understand what is good about it and what can be improved, and if the participants would continue using it.
Sixty participants over 18-years-old, who had been diagnosed with a muscle wasting condition by a neurologist from the Queen Square Centre for Neuromuscular Diseases took part. NM Bridges was made available to participants as part of their regular appointments, making it a part of routine healthcare. The impact of introducing this was measured at the beginning, immediately after, and three months later.
Findings
From this study, Dr Laurence Lee and Dr Gita Ramdharry found the programme to be helpful to both clinicians and people living with muscle wasting conditions. It helped clinicians in their work, and, importantly, helped people with muscle wasting conditions build confidence and use resources offered through the SMS programme more effectively.
What’s next?
The study provided valuable information on NM Bridges. The participants with muscle wasting conditions found the study accessible, as well as practical and helpful. The study was helpful for clinicians, as it provided training on how to apply the NM Bridges programme in specialist clinics.
Next steps involve implementing this programme in specialist clinics across the UK, as well as expanding it to other forms of muscle wasting conditions, such as Charcot-Marie-Tooth disease and Kennedy’s disease.
For more details, see the original manuscript here.
‘What’s new in research’ is our monthly blog series that will feature recent advancements in research into muscle-wasting conditions. Each month, a research article will be summarised for you by our research communications volunteers, all of whom have backgrounds in various fields of research.
This piece is written by Yiru Chen. Yiru got her BSc (Hons) in Materials Science and Engineering at the University of Manchester. She got involved in writing for MDUK because she is enthusiastic about scientific studies that will improve lives. She wants to utilise her scientific knowledge to get more people to understand and pay attention to muscle-wasting conditions.