What is obstructive sleep apnoea (OSA)?

With sleep onset, including when promoted by alcohol or sedative therapy, the muscles of the upper airway relax. In predisposed individuals (ie those with a small mouth, obesity, enlarged tonsils – especially in children – and those with either a small and/or receding jaw), the airway may narrow to a critical level (hypopnoea) or block completely (apnoea).

These episodes of apnoea or hypopnoea last for 10 seconds or longer in adults and, if they occur frequently during sleep, may produce a variety of effects. The episodes are terminated by the individual briefly waking (arousal) before then falling asleep again, with the cycle repeating throughout the sleeping period.

Such events are often associated with drops in the oxygen level to surprisingly low levels. Although there is no threshold, the National Institute for Health and Care Excellence defines this sleep apnoea as ‘mild’ (less than 15 events per hour), ‘moderate’ (15 to 30 events per hour) or ‘severe’ (more than 30 events per hour).

OSA can be common in people with a learning disability, in particular people with Down’s syndrome.

Symptoms

The symptoms of sleep apnoea are varied but usually include:

• loud snoring
• witnessed pauses in breathing terminated by ‘grunts’
• frequent arousals lead to intrusive daytime sleepiness, poor memory, irritability and low mood. In some individuals (especially children) there may be hyperactivity and for some adults, insomnia
• related to pressure swings in the chest there may be frequent passing of urine at night and nocturnal palpitations or onset of cardiac arrythmias.

The development of the above symptoms is often gradual with many individuals having the above features for many years, which can be exacerbated by weight gain or introduction of sedative medication.

Untreated individuals may fall asleep while driving, or operating machinery and often will sleep in company causing family and personal distress. Medically untreated obstructive sleep apnoea is associated with hypertension, cardiac arrhythmias and other heart problems, which can result in premature death.

Assessment and diagnosis

Some people with a learning disability and autistic people may not be able to express that they have a sleep problem and so identification may need to be based on observations or information from carers.

If symptoms are noticed, then consideration of referral to a hospital sleep service for more formal assessment should be considered.

Episodes of apnoea or hypopnoea are determined by a clinical assessment called a sleep study, usually performed in the individual’s own home and analysed by technical staff.  When taken in conjunction with symptoms, the findings lead to different treatment options.

Untreated obstructive sleep apnoea (OSA) can impact on mental health as well as causing significant risks to physical health and so assessment and treatment for OSA should be prioritised for people with a learning disability and autistic people, who often face health inequalities and the risk of premature mortality.

Treatment

Treating reversible factors such as weight gain or new medications should be considered first, together with improving sleep hygiene. However, for many patients with significant symptoms and moderate or severe obstructive sleep apnoea (OSA), a device to bring the jaw forward may be considered, depending upon the features on inspection of the mouth, but the most effective treatment is continuous positive airway pressure (CPAP).

 CPAP consists of a small machine that blows a large volume of air through tubing, to a snugly fitting mask. This high volume of air creates a slight increase in pressure in the upper airway and thus splints open the airway, preventing collapse and thus treating OSA. Although a strange feeling initially, hospital sleep services are well versed in finding the correct pressure setting and mask to make the use of CPAP as comfortable as possible.

CPAP is not a cure but, if used every night, it is very effective at reversing the symptoms of OSA. It is therefore very important to use CPAP consistently and people should be encouraged to both put the mask on and use CPAP throughout the night. If there are any issues with CPAP use, the hospital sleep service that issued the machine should be contacted (the next working day) to correct the problem.

Risks of non-compliance with continuous positive airway pressure (CPAP) treatment

Recent safeguarding investigations have identified an association between people with a learning disability and autistic people dying and their CPAP machines not having been used as prescribed (Norfolk safeguarding adult review: Joanna, Jon and Ben (2021) and Clive Treacey independent review (2021).

If people do not use their CPAP machine, as well as experiencing ongoing symptoms of obstructive sleep apnoea (OSA), there is a risk of serious health problems including increased blood pressure, risk of having a stroke, developing diabetes or dying with heart disease. Healthcare professionals supporting people with a learning disability and autistic people should ensure that CPAP users are compliant with treatment as prescribed and support them to access a timely review via the hospital sleep service to resolve any difficulties. CPAP should continue to be used in mental health inpatient settings, with appropriate risk assessment. (See our leaflet on supporting people with a learning disability and autistic people with OSA in mental health settings).

Continuous positive airway pressure (CPAP) for people with a learning disability and autistic people

People with a learning disability and autistic people with obstructive sleep apnoea (OSA) may be at increased risk if they or their carers do not understand the importance of consistently using a CPAP machine.

It is possible to issue a CPAP machine that has the capability of both monitoring how regularly it is used and making remote adjustments. It is strongly recommended that people with a learning disability and autistic people are issued a CPAP machine with remote monitoring capabilities, due to their increased risk of premature mortality and to reduce the frequency of required attendance at the hospital sleep service clinic.

Healthcare professionals supporting continuous positive airway pressure users should:

• advocate for people with a learning disability and autistic people to be issued a CPAP machine with remote monitoring capability
• contact the hospital sleep service if people are not using CPAP consistently and request a review (either by interrogation of remote data or via a telephone or face-to-face consultation).

Reasonable adjustments (for example, longer appointments, extra time to support CPAP use should be made to support engagement with assessment and treatment. It would be helpful to share our easy read guides and carer guide, to help patients and families understand the importance of treatment.

It is important that compliance is reviewed within primary care annual health checks for people with a learning disability and autistic people with OSA.

Lifestyle advice

Smoking, alcohol use and excess weight can contribute to the need for continuous positive airway pressure treatment. Supporting people to develop a healthy lifestyle through exercise and healthy eating can improve mental health and reduce risks to physical health. Other lifestyle changes such as cutting down on alcohol, stopping smoking or medication review can also help.

People with a learning disability who lack capacity to make decisions about diet, exercise and weight management must be appropriately safeguarded against the risks associated with excess weight. A formal safeguarding alert should be raised where neglect has manifested in the form of obesity.

Continuous positive airway pressure (CPAP) equipment

When CPAP is prescribed, the patient should receive:

• a CPAP machine with filters and power cable
• mask (either full face, nasal or nasal pillows depending on how they breathe
• tubing
• humidifier (optional as not everyone requires this)
• oxygen (only for those who have been diagnosed with hypoxaemia), oxygen entrainment port, oxygen concentrator and oxygen tubing.

Mask Fit

If the mask does not fit correctly, it can cause discomfort and increases the risk of non-compliance with treatment. Air can leak into the patient’s eyes and the mask can make loud noises, which disturb sleep. Users need a good air seal around the mask without the straps needing to be tight, as this could cause pressure sores. Signpost people to the hospital sleep service for review if problems with mask fit cannot be addressed. 

Infection control

It is important that masks, tubing and filters are cleaned regularly, as this prevents the risk of skin irritation and chest infections. Continuous positive airway pressure is an aerosol-generating procedure and, if there is a risk of airborne infection such as COVID-19, appropriate infection control precautions should be taken.

Annual servicing

The continuous positive airway pressure machine must be serviced every year following the manufacturer’s guidance. This ensures the device is working correctly and safely.

Further Information

Further information can be found on the National Institute for Health and Care Excellence website.  

This guideline covers the diagnosis and management of obstructive sleep apnoea/hypopnoea syndrome (OSA), obesity hypoventilation syndrome and chronic obstructive pulmonary disease with OSA (COPD-OSA overlap syndrome) in people over 16. It aims to improve recognition, investigation and treatment of these related conditions.