An exploration of oral nutrition support in Motor Neurone Disease
Research type
Research Study
Full title
An exploration of oral nutrition support in Motor Neurone Disease: experiences and perceptions from patients and carers
IRAS ID
170450
Contact name
Scott Reeves
Contact email
Sponsor organisation
St George's University
Duration of Study in the UK
0 years, 4 months, 18 days
Research summary
Motor Neurone Disease (MND) is an incurable progressive neurodegenerative disease. It is characterised by the gradual loss of mobility and communication, as well as the loss of swallow function, potentially requiring tube feeding for the provision of adequate nutrition and hydration. Maintaining quality of life in this patient group is important given the short average life expectancy, which ranges from six months to five years from onset of symptoms.
It is estimated that 70-81% of people with MND experience difficulties with eating and drinking due to progressive swallowing difficulties, subsequently resulting in a reduced dietary intake. If weight loss occurs or a reduced appetite is reported, 'oral nutrition support' (ONS) may be offered in the form of prescribed high calorie drinks (oral sip feed drinks) and/or dietary information, with the aim of weight stabilisation and improved nutritional status.
Weight loss in MND has been shown to result in a shorter prognosis and survival time. It is therefore important that the timing and provision of ONS is appropriate in order to maximise the opportunities to improve nutritional status, and in view of the rapid disease progression. By understanding the experiences of people living with MND receiving ONS, the aim is to help provide evidence to deliver clinical services more effectively, improve outcomes and the patients' overall experience.
Patients with MND attend outpatient clinics on a three monthly basis. Any patients with a confirmed diagnosis of MND who have received or are already receiving oral nutrition support input, plus their carers, will be considered for study participation.
The participants will be required to take part in a single interview for 30-40minutes to discuss their experiences of receiving oral nutrition support. No further input will be required following this interview, however participants may be invited to review the interview transcript for accuracy purposes.
REC name
London - Hampstead Research Ethics Committee
REC reference
15/LO/0567
Date of REC Opinion
10 Apr 2015
REC opinion
Favourable Opinion