Quality standard
Quality statement 2: Respiratory assessment and non‑invasive ventilation
Quality statement 2: Respiratory assessment and non‑invasive ventilation
Quality statement
Adults with motor neurone disease (MND) who have respiratory impairment are offered non‑invasive ventilation (NIV) based on regular assessments of respiratory function and symptoms.
Rationale
Progressive respiratory muscle weakness resulting in respiratory impairment is a major feature of MND. The onset of respiratory failure (when a person is unable to breathe adequately to maintain normal oxygen levels and clear waste gases without support) can be sudden and unexpected, and may lead to emergency ventilation or death. Regular monitoring of respiratory function by MND multidisciplinary teams allows respiratory muscle weakness to be identified before symptoms of respiratory impairment appear. It also means that strategies such as NIV can be offered and started before an emergency situation occurs. NIV can improve symptoms and signs related to respiratory impairment, and improve quality of life and survival. Decisions to offer NIV are made between the MND multidisciplinary team, the respiratory ventilation service and the person with MND.
Quality measures
The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.
Structure
a) Evidence that MND multidisciplinary teams include respiratory physiologists or healthcare professionals who can assess respiratory function.
Data source: Local data collection.
b) Evidence of local arrangements and written protocols to ensure that adults with MND have their respiratory function and symptoms assessed at diagnosis and then every 2 to 3 months.
Data source: Local data collection.
c) Evidence of established relationships and decision making arrangements between MND multidisciplinary teams and respiratory ventilation services.
Data source: Local data collection.
d) Evidence of local arrangements to provide NIV for adults with MND who have respiratory impairment.
Data source: Local data collection.
Process
a) Of adults diagnosed with MND, the number of adults who had their respiratory function and symptoms assessed as part of the initial assessment to diagnose MND.
Data source: Local data collection based on extracts from or reviews of individual care records. At provider or commissioning level, data collection will involve small numbers.
b) Of adults with MND, the number who have had their respiratory function and symptoms assessed within the past 3 months.
Data source: Local data collection based on extracts from or reviews of individual care records. At provider or commissioning level, data collection will involve small numbers. At national level, self‑reported information on the frequency of breathing monitoring and assessments is presented in the Improving MND Care survey from the Motor Neurone Disease Association (MNDA).
c) Of adults with MND who have respiratory impairment, the number who are established on NIV.
Data source: Local data collection based on extracts from or reviews of individual care records. At provider or commissioning level, data collection will involve small numbers.
What the quality statement means for different audiences
Service providers (such as MND multidisciplinary teams and respiratory ventilation services) ensure that they assess people's respiratory function and symptoms as part of the initial assessment to diagnose MND, or soon after diagnosis, and then every 2 to 3 months. Providers ensure that there are local arrangements for timely provision of NIV and agreed local protocols for referral to this service.
Healthcare professionals (members of the MND multidisciplinary team, such as respiratory physiologists or healthcare professionals who can assess respiratory function) ensure that they assess respiratory function and symptoms as part of the initial assessment to diagnose MND, or soon after diagnosis, and then every 2 to 3 months. Members of the MND multidisciplinary team should make decisions to offer NIV in conjunction with the respiratory ventilation service and the person with MND.
Commissioners ensure that the services they commission have MND multidisciplinary teams that include healthcare professionals with appropriate competencies to perform respiratory function tests and monitor signs and symptoms of potential respiratory impairment. Decisions to offer NIV should be taken by MND multidisciplinary teams in conjunction with respiratory ventilation services, and based on the respiratory assessments.
Adults with MND are regularly checked to see if they are having any problems with their breathing. These checks should happen when they are diagnosed with MND (or shortly afterwards) and then in regular appointments with a team of specialists called an MND multidisciplinary team (usually every 2 to 3 months). Adults with MND who are having difficulty breathing are offered non‑invasive ventilation using a portable ventilator – a machine that supports the person's breathing. Decisions about non‑invasive ventilation are shared between the multidisciplinary team, the respiratory ventilation service and the person with MND.
Source guidance
Motor neurone disease. NICE guideline NG42 (2016), recommendations 1.5.3, 1.12.1, 1.12.2, 1.14.7, and 1.14.8 to 1.14.15
Definitions of terms used in this quality statement
Non-invasive ventilation
Non-invasive ventilation refers to methods of providing ventilatory support to a patient without placing an artificial airway in the main windpipe (trachea). This is usually achieved by fitting a mask covering the nose, or mouth and nose, or using nasal tubes or a mouthpiece, which is connected to a ventilator by tubing. The ventilator detects when the patient tries to take a breath in and delivers an extra flow of air to increase the volume of air inhaled. [NICE's full guideline on motor neurone disease, glossary]
Regular assessments of respiratory function and symptoms
Respiratory function tests performed as part of the initial assessment to diagnose MND, or soon after diagnosis, by MND multidisciplinary team members such as respiratory physiologists or healthcare professionals who can assess respiratory function. Thereafter respiratory function tests are performed every 2–3 months, although occasionally tests may be performed more or less often depending on:
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whether there are any symptoms and signs of respiratory impairment
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the rate of progression of MND
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the person's preference and circumstances.
[Adapted from NICE's guideline on motor neurone disease, recommendations 1.14.7, 1.14.8 and 1.14.10, and expert opinion]
Respiratory function tests to be undertaken at diagnosis and ongoing assessment are those detailed in NICE's guideline on motor neurone disease, section 1.14.
Symptoms and signs monitored in an assessment to detect potential respiratory impairment are set out in box 1 of NICE's guideline on motor neurone disease, recommendation 1.14.7.
Assessment in the context of this statement also includes assessment of bulbar function, because this affects the type tests performed and the response to NIV. [NICE's guideline on motor neurone disease, recommendations 1.14.9, 1.14.18; expert opinion]
Assessment for potential respiratory impairment includes monitoring cough effectiveness (weak cough being a sign of potential respiratory impairment) potentially by measuring cough peak flow. [NICE's guideline on motor neurone disease, recommendation 1.14.7; expert opinion]