Nutritional study aims to improve quality of life for MND patients

  • MND affects 6,000 people in the UK. The condition destroys cells that control movement leaving patients unable to move, walk, talk and breathe
  • Poor nutrition and weight loss are well-recognised factors in accelerating poor outcomes for patients
  • £2.3 million programme aims to develop an intervention to improve dietary support

A pioneering study examining the nutritional management of people with Motor Neurone Disease (MND) will help to improve care and treatment for patients.

The £2.3 million programme, which aims to develop an intervention to improve dietary support for people with the chronic condition, is being led by the University of Sheffield and Sheffield Teaching Hospitals NHS Foundation Trust, and is funded by the National Institute for Health Research (NIHR).

There is currently no effective treatment for MND, also known as amyotrophic lateral sclerosis (ALS), which destroys the cells that control movement - leaving sufferers unable to move, walk, talk and eventually breathe.

Most patients with the disease are only expected to live two to five years after diagnosis.

MND affects 6,000 people in the UK and poor nutrition and weight loss are well-recognised factors in accelerating poor outcomes for people with the disease.

The research programme, entitled HighCALS, will review current practice and identify enablers and barriers for patients, carers and healthcare professionals, and use this information to develop a personalised nutritional support package that will be evaluated in a randomised controlled trial.

Dan Beever, Programme Manager from the University of Sheffield’s School of Health and Related Research (ScHARR), said: “If the trial demonstrates the intervention to be effective, then this could help to prolong the life of people with MND and improve their daily function and quality of life. 

“The programme will also provide a clear picture of the current status of nutritional services for people with MND, and create resources of benefit to patients in self-management, as well as healthcare professionals in designing and delivering services.”

Chris McDermott, Professor of Translational Neurology at the University of Sheffield, Consultant Neurologist at Sheffield Teaching Hospitals and Chief Investigator on the study, said: “There is increasing scientific data that nutrition and metabolism play an important role in how MND progresses.

“However, as yet there is no robust clinical evidence to guide individuals living with MND or their health care professionals on what is the best diet for helping in MND.”

Professor McDermott who is also Deputy Director of the NIHR Sheffield Biomedical Research Centre (BRC), added: “We hope that this work will give the evidence to ensure that all individuals with MND receive the best diet to give them the best outcomes in terms of function, quality of life and survival.”

The study, which is led in collaboration with the University of Leeds, University of Oxford and King’s College London, is in direct response to recent guidance (2016) from the National Institute for Health and Care Excellence (NICE) which identified a lack of evidence around nutritional management for people with MND as a priority research recommendation.

HighCALS has been funded by the NIHR Programme Grants for Applied Research programme and will also be supported by the NIHR Sheffield Biomedical Research Centre which specialises in improving care and treatment for those with chronic neurological disorders.

For more information about HighCALS please visit: https://www.sheffield.ac.uk/scharr/highcals

To find out more about the NIHR Sheffield Biomedical Research Centre please visit: http://sheffieldbrc.nihr.ac.uk/

Ends

For further information please contact: Amy Huxtable, Media Relations Officer, University of Sheffield, 0114 222 9859, a.l.huxtable@sheffield.ac.uk.

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