Managing respiration and nutrition in MND

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This is blog number 9 in our ‘Symposium Blogathon’ – counting down to the 32^nd International Symposium on ALS/MND. Numbers in bold green type correspond to the code in the abstract book. Click on the number to be redirected to the full abstract (the page may take a minute to load).

Managing respiration

MND can affect the way a person breathes by weakening the muscles that control breathing. Although this cannot be reversed, there are treatments that can help reduce symptoms such as disturbed sleep, fatigue and anxiety, and enable the person to breath more effectively.

When breathing becomes weaker a machine may be used to support breathing. This is known as assisted ventilation. There are two types of assisted ventilation: non-invasive ventilation (NIV), where a machine supports breathing by boosting the intake of normal air through a mask, and tracheostomy ventilation, where a tube is inserted into the windpipe through the front of the neck, which enables a ventilator to support breathing. The use of ventilation may not be suitable for everyone. If appropriate, it may help to relieve breathing problems but will not stop the progress of the disease.

In his oral presentation, Jochem Helleman from the UMC Utrecht Brain Centre in the Netherlands, will talk about the ‘Reliability and feasibility of unsupervised vital capacity testing at home in patients with MND’ (C26). Home-based monitoring of spirometry allows for more frequent assessments of respiratory function and saves travel and clinic burden. The aim of this study was to assess if unsupervised home-based vital capacity (VC) testing was reliable and feasible for people living with MND. Thirty-three patients took part over 12 weeks and the researchers found that home-based VC testing, with proper face-to-face training, and reminders during follow-up, is a viable method for the remote monitoring of respiratory function, and well accepted by people living with MND and their caregivers.

Is earlier initiation of non-invasive ventilation better?

Non-invasive ventilation (NIV) improves survival time in people with MND by seven months on average. Recent studies suggest that earlier initiation of NIV is associated with improved survival. A retrospective review of patients with an active NIV order was carried out at an MND clinic in the USA and the date of first NIV order and the reason – abnormal overnight oximetry or in-office spirometry – was recorded. The review showed that respiratory dysfunction from MND was detected earlier with overnight oximetry compared to in-office spirometry. This is a significant finding as the continuing Covid-19 pandemic means there are safety concerns with performing aerolising procedures like spirometry, and increasing telehealth visits. Further study is needed to determine how earlier initiation of NIV affects quality of life and overall survival (CMS-01).

Although spirometry is commonly used to monitor respiratory function in MND, its use is not appropriate in patients with bulbar or cognitive impairment. Arterial blood gas (ABG) has been found to correlate moderately with forced vital capacity (FVC). After analysing data from 488 people with MND, the research team from Italy found that combining ABG with clinical evaluation of dyspnea (shortness of breath) improves the ability to assess early respiratory function in MND, especially in patients with bulbar or cognitive impairment (CMS-54).

Many patients fail to receive effective ventilation, and service provision varies across the UK. Based on previous research and expert focus groups, an evidence-based education toolkit called NIV4MND has been developed to educate healthcare professionals (HCPs) about NIV in MND care. Data was collected from HCPs across the UK via questionnaire and questions centred around design, content, usability and future use. Analysis showed that participants felt the toolkit represented available evidence and agreed best practice, and filled a gap in the current education landscape. Key areas for improvement were noted and will be implemented into the site. The website clearly reflects the key messages that experts feel are important and it will act as a complementary site to mybreathing.co.uk which provides similar information for patients and carers of those considering NIV (CMS-24).

Supporting nutrition needs

Eating and drinking form an emotive part of our lives, bringing us comfort and pleasure. Being nourished is not just about calories – for most of us, the enjoyment of food and flavour is incredibly important to quality of life. Knowing how to maintain this when living with MND can make a huge difference.

With MND, the way a person eats and drinks may need to be adapted to help them get the nutrition and fluids their body needs. They may experience difficulties with chewing and swallowing, problems with hand and arm control, reduced mobility (making food preparation difficult) and fatigue, which can make the effort of eating and drinking tiring in itself.

Weight loss in MND is associated with faster disease progression and shorter survival and has several possible causes. These include loss of appetite, difficult in swallowing and hypermetabolism, which is an increase in the rate at which energy is burned – even though mobility may be limited, a person ‘burns off’ more calories than they consume.

Some people with MND choose to have a gastrostomy. This allows tube feeding – a way of passing specially prepared food and fluids straight into the stomach.

In his plenary talk ‘Optimising nutrition for people living with amyotrophic lateral sclerosis’ (C6), Professor Chris McDermott, from SiTRaN at the University of Sheffield, discusses OptiCALS (Optimal Calories in ALS), a user centred nutritional intervention to support people with MND to increase their calorie intake and guide healthcare professionals in assessing nutritional status.

OptiCALS is also discussed in more detail in poster CMS-55.

People with a forced vital capacity (FVC) of less than 50%, or abnormal overnight pulse oximetry have higher risk of respiratory failure when undergoing gastrostomy tube placement under respiratory depressant anaesthetics. Radiologically-inserted gastrostomy (RIG) tubes with local anaesthesia and limited sedation offer an alternative. Researchers in the USA set out to determine the feasibility and outcomes of RIG placement with limited sedation in 28 people with MND who had an average FVC of 46%, and an average time between symptom onset and RIG tube placement of 673 days. Analysis showed RIG placement with local anaesthesia with limited sedation is a feasible and safe option for people with MND, including those with more advanced disease (CMS-37).

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