Enhancing patient quality of life
Every year motor neuron disease (MND) claims the independence of over 2,000 people in the UK. Researchers from the Sheffield Institute for Translational Neuroscience (SITraN) are working to enhance patient quality of life while we wait for disease modifying therapies to come through.
Motor neurons directly and indirectly control our muscles and glands. When MND destroys these cells, it impacts our ability to run, walk and breathe independently and even look up from the ground.
Our dedicated researchers assess all aspects of MND. From how patients with weak neck muscles could be given the best support to hold their head up, how nutritional management could alleviate the caloric deficit suffered by many, to assessing psychological coping strategies and improving clinical services for patients.
To truly enhance quality of life our patients are at the centre of all our work. We involve them at all different stages of research and development to ensure the end result is right for them.
Our research shows how we can take an idea, work on it, develop it in partnership with patients themselves, test it and then take it into the real world and give a real benefit to people.
Professor Chris McDermott
Professor of Translational Neurobiology, Consultant Neurologist and Deputy Director of NIHR Sheffield Biomedical Research Centre
Head Up collar
The key feature of MND is the degeneration of the cells responsible for muscle control. This can result in an inability to simply lift your head, preventing you from eating, drinking or even watching TV unaided.
The various collars and neck braces that were available to support the neck and head of patients with MND were uncomfortable to wear. They were either too soft, offering insufficient support, or too rigid, designed for sports injuries and trauma accidents rather than for MND.
After listening to patients describe the inadequate support these collars provided, Professor Chris McDermott led a collaboration to develop a new collar.
The novel Head Up collar is made from comfortable, temperature regulating, Outlast technology. After trying the collar, more than 80% of patients reported they could eat, drink and read comfortably, knowing that their head and neck were fully supported.
The collar has now been rolled out across the NHS, it’s available through at least 100 trusts across the UK and has been sold commercially around the world.
Optimising nutritional and respiratory management
Malnutrition is a frequent problem for sufferers of MND. Difficulty preparing and consuming food, coupled by a typically raised metabolic rate are both contributing factors.
The HighCALS research programme is developing and evaluating a complex intervention to improve nutritional management for people with MND.
Underpinning HighCALS is a programme of work designed to understand the current national service models, the beliefs of stakeholders and the development of behaviour change strategies to support and improve nutritional interventions. The team will conduct an effectiveness study to investigate whether the HighCALS intervention can prolong life in those with MND.
Addressing this potentially simple issue could have a dramatic impact on survival, function and quality of life for the 6000 people living with MND in the UK at any one time.
Optimising non-invasive ventilation use
Muscle weakness due to MND causes an array of problems – including difficulty breathing. Non-invasive ventilation (NIV) methods include wearing a face mask going over the nose and mouth to supply oxygen or more discrete nasal clips to support breathing. NIV is recommended to assist breathing in MND patients.
A UK wide survey of NIV use was conducted by researchers at SITraN to map current practice standards at different locations. They have developed an online tool and information resources to help patients make informed decisions and service providers deliver NIV in the most effective way for patients.
The research involved conversations with key stakeholders including policy makers, patients, carers and respiratory management staff. Clinical practice has now been changed nationally and internationally reflecting the benefits of NIV presented by this research.
Many people with MND experience distress due to the nature of the disease, it’s impact and the outlook for patients.
At SITraN, we have expanded the Sheffield MND Care Centre multidisciplinary team to include a Clinical Psychology Service to help patients adjust to life with MND.
We have been trialling acceptance and commitment therapy for people with MND to assess the benefit of this type of intervention.
A new online system developed by researchers at SITraN enables healthcare professionals to remotely monitor and support patients with MND, streamlining clinic visits for patients who may find it difficult to travel frequently.
The Telehealth in Motor Neuron Disease (TiM) system has been rolled out to patients across Sheffield and Edinburgh. Through the app patients can seamlessly and securely connect with their healthcare provider through a web browser or mobile app. They can use it to answer a series of questionnaires about their health on a weekly basis. A key benefit is that this gives their clinician real time data on how their patients are progressing – something particularly important during the Covid-19 pandemic. Patients are also able to get much needed advice on how to manage their condition and attend virtual appointments with their clinicians.
Motor neuron disease causes significant life-limiting problems and we had already recognised that it was not ideal to ask patients to travel long distances for routine check-ups. However, Covid-19 made it critical that we took extra steps to protect these very vulnerable patients away from a hospital setting whilst continuing to manage their highly specialised care.
Dr Esther Hobson
Honorary Senior Lecturer at SITraN and Consultant Neurologist at Sheffield Teaching Hospitals NHS Foundation Trust
Building the evidence base for clinical interventions
Clinical interventions have the potential to transform the lives of MND patients by helping to manage pain and improve overall quality of life. Our researchers are dedicated to building the evidence basis for many clinical interventions to help those with MND adjust to everyday life.
Respiratory failure usually causes death in MND patients within 2-3 years of symptom onset. Diaphragm pacing involves surgically placed electrodes that stimulate diaphragm muscle contraction in place of mechanical ventilation. It is an invasive procedure that had been approved by the FDA without a randomised control trial to assess safety and efficacy. The DiPALS study, led by SITraN, showed that diaphragm pacing is actually harmful in MND (DiPALS 2015 The Lancet, McDermott et al Health Tech Assess 2016), saving futile NHS investment and providing evidence to help patients avoid harmful surgery.
We are currently leading a multicentre study on secretion management in MND. Patients with difficulty swallowing can develop the troublesome symptom of persistent drooling or experience being unable to clear sticky saliva which risks choking. ProSec is the largest ever study into secretion management in MND to provide doctors with high quality evidence to guide treatment.
Our researchers led a UK-wide team providing evidence to support early nutrition management in MND. Pro-gas found that MND patients benefited most from enteral feeding before they had lost substantial body weight, supporting early intervention. These results informed NICE guideline NG42 (Feb 2016), changing clinical practice nationally to improve the information to clinicians for MND patients.
This is a follow-up multicentre observational study on the effect of gastronomy feeding to provide evidence-based guidance on how to improve nutrition and limit weight loss in people with MND after gastrostomy.
To find out more about our patient quality of life research please contact Katie Johnson on email@example.com
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