Diagnosis and MND - help researchers by filling out a survey
Research team from Edge Hill University and the University of Kent, led by Prof Mary O’Brien and Prof David Oliver, are inviting people with MND to take part in their study looking at the way diagnosis is told to people, the information they are given and if the process is in line with the guidance produced by the National Institute for Health and Care Excellence (NICE). They are also looking for family members/caregivers of people diagnosed with MND to understand more about how the process is seen by them.
You will be asked to complete a questionnaire asking about your (or your family member’s) experience of being told the diagnosis of MND. The questionnaire is web-based and can be accessed via the links below.
High rates of cognitive and behavioural decline in MND
A recent paper by Dr Christopher Crockford, Prof Sharon Abrahams and colleagues, published in the journal Neurology, found that up to 80% of people living with MND will have some form of cognitive or behavioural impairment by the final stage of their disease (or in other words, only 20% will have an intact cognitive and behavioural processing).
Findings of this study make an important point of the necessity of including cognitive and behavioural testing into routine MND assessments tests, already suggested in the NICE guidelines on MND. It is also important to provide all people diagnosed with MND and their carers with information on the mind-related changes that are likely to occur throughout the course of the disease, and guidance on how to manage these.
Enhanced support for carers might improve their quality of life and reduce carer burden by using more effective ways to communicate with people with a cognitive or behavioural impairment. It is also important to consider the effect any mind-related changes might have on end-of-life decisions.
Cough decline rate predicts MND survival
In MND, weakness of inspiratory and bulbar muscles leads to decreased cough effectiveness and flow, impacting on the safety of swallowing. A recent study found that a rapid decline of 'cough peak flow' (CPF; more than 25%/year) in the early stages of the disease leads to shorter survival. Measuring CPF in an outpatient setting might therefore be a good addition to the measures of MND prognosis.
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The Research Development team be reached by phone 01604 611880 or by email on email@example.com. If you’d like to chat about any of these articles, please get in touch.