News & Events
New research shows treatment offers better quality of life and longer survival for people with MND
20 January 2006
A relatively inexpensive piece of medical equipment could extend the life of someone with Motor Neurone Disease by several precious months, according to UK research published this week.
Half of people with MND, a fatal disease that attacks the nervous system, die within 14 months of diagnosis. The one drug licensed to treat the disease only extends life by two to three months.
But a study published in the February edition of Lancet Neurology shows that a simple ventilator pump and face mask can extend survival on average by more than six months, and also significantly improve quality of life.
Non-invasive ventilation (NIV) works by helping people with MND who have weakness of the respiratory muscles maintain adequate blood oxygen levels. It brings about a restful night’s sleep by helping people with MND clear their lungs of carbon dioxide build-up. The study shows that people’s quality of life is better as a result, and that they also live longer. In some people, NIV can prolong survival by several years.
Dr Kirstine Knox, Chief Executive of the MND Association, said: “It may not sound much, but six extra months is a long time for someone with MND and their family.
“This a significant move forward in our understanding of how to treat MND, and I hope doctors take note and prescribe NIV, where appropriate, to their MND patients.”
The results have been published by researchers at the University of Newcastle-upon-Tyne, led by Dr Stephen Bourke, Prof John Gibson and Prof Pam Shaw, after they completed the first ever randomised controlled trial of NIV.
Don Setford, 76, of Hayward’s Heath in Sussex, was diagnosed with MND in 2003. He has been using NIV for over two years, and said: “I’d been unable to sleep at night and was waking almost 40 times an hour. I was not taking in enough oxygen and not breathing out waste gases properly. As a result I felt dreadfully ill. It was like one of the worst hangovers I’ve ever had, every morning.
“I started having hallucinations during the day because I wasn’t getting enough sleep. I couldn’t get my head straight, and without NIV, I’m not sure I would have managed. I probably would have given up by now.”
The MND Association, which part-funded the research, will now be urging the National Institute for Health and Clinical Excellence (NICE) to consider recommending that NIV is offered to all MND patients.
Half of people with MND, a fatal disease that attacks the nervous system, die within 14 months of diagnosis. The one drug licensed to treat the disease only extends life by two to three months.
But a study published in the February edition of Lancet Neurology shows that a simple ventilator pump and face mask can extend survival on average by more than six months, and also significantly improve quality of life.
Non-invasive ventilation (NIV) works by helping people with MND who have weakness of the respiratory muscles maintain adequate blood oxygen levels. It brings about a restful night’s sleep by helping people with MND clear their lungs of carbon dioxide build-up. The study shows that people’s quality of life is better as a result, and that they also live longer. In some people, NIV can prolong survival by several years.
Dr Kirstine Knox, Chief Executive of the MND Association, said: “It may not sound much, but six extra months is a long time for someone with MND and their family.
“This a significant move forward in our understanding of how to treat MND, and I hope doctors take note and prescribe NIV, where appropriate, to their MND patients.”
The results have been published by researchers at the University of Newcastle-upon-Tyne, led by Dr Stephen Bourke, Prof John Gibson and Prof Pam Shaw, after they completed the first ever randomised controlled trial of NIV.
Don Setford, 76, of Hayward’s Heath in Sussex, was diagnosed with MND in 2003. He has been using NIV for over two years, and said: “I’d been unable to sleep at night and was waking almost 40 times an hour. I was not taking in enough oxygen and not breathing out waste gases properly. As a result I felt dreadfully ill. It was like one of the worst hangovers I’ve ever had, every morning.
“I started having hallucinations during the day because I wasn’t getting enough sleep. I couldn’t get my head straight, and without NIV, I’m not sure I would have managed. I probably would have given up by now.”
The MND Association, which part-funded the research, will now be urging the National Institute for Health and Clinical Excellence (NICE) to consider recommending that NIV is offered to all MND patients.
Contact:
Sarah Fitzgerald,
Head of PR and Media
01604 611840 or 07831 349382
sarah.fitzgerald@mndassociation.org
01604 611840 or 07831 349382
sarah.fitzgerald@mndassociation.org
Notes to editors
Non-invasive ventilation (NIV) is also sometimes known as non-invasive positive pressure ventilation (NIPPV).
Full reference of published research:
The Lancet Neurology, Volume 5, Issue 2, February 2006, Pages 140-147
Commentary:
The Lancet Neurology, Volume 5, Issue 2, February 2006, Pages 105-6
Full reference of published research:
The Lancet Neurology, Volume 5, Issue 2, February 2006, Pages 140-147
Commentary:
The Lancet Neurology, Volume 5, Issue 2, February 2006, Pages 105-6
