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

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 2–3 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 clinical commissioning group 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 clinical commissioning group 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.

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 clinical commissioning group level, data collection will involve small numbers.

Outcome

a) Survival of adults with MND from diagnosis.

Data source: Local data collection.

b) Adults with MND able to maintain activities of daily living.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

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 2–3 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 2–3 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 (such as clinical commissioning groups and NHS England) 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.

What the quality statement means for patients, service users and carers

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 2–3 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 (2016) NICE guideline NG42, recommendations 1.5.3, 1.12.1, 1.12.2, 1.14.7, and 1.14.8–1.14.15

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.

[Motor neurone disease (NICE guideline NG42), full guideline 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:

  • whether there are any symptoms and signs of respiratory impairment

  • the rate of progression of MND

  • the person's preference and circumstances.

[Adapted from Motor neurone disease (NICE guideline NG42), 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 motor neurone disease (NICE guideline NG42), section 1.14.

Symptoms and signs monitored in an assessment to detect potential respiratory impairment are set out in box 1 motor neurone disease (NICE guideline NG42), 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.

[Motor neurone disease (NICE guideline NG42), 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.

[Motor neurone disease (NICE guideline NG42), recommendation 1.14.7; expert opinion]