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Key points

  • Dysphagia describes eating, drinking and swallowing difficulties in infants, children and young people and adults
  • It often occurs with other health conditions, such as being born prematurely, having learning disabilities, dementia and stroke
  • It may also affect the person’s quality of life, as eating and drinking is important for social life
  • If not treated appropriately, dysphagia can lead to other health complications and in worst case can result in death
  • Speech and language therapists play a key role in the identification and management of dysphagia
 

 

What is dysphagia?

Dysphagia describes eating, drinking and swallowing difficulties in infants, children and adults. People with dysphagia often have other health conditions that they are being treated for which affects their eating, drinking and swallowing abilities. 

Infants, children and young people

Dysphagia in infants, children and young people can be associated with a number of different conditions:

  • being born prematurely
  • neurological deficits, e.g. 
    • acquired traumatic brain injury
    • Rett syndrome
  • oncology/tumours
  • cerebral palsy
  • infectious diseases, e.g.
    • meningitis
  • neuromuscular disorders, e.g. 
    • muscular dystrophy
  • respiratory difficulties, e.g.
    • chronic lung disease,
  • cardiovascular disorders, e.g.
    • congenital heart disease
  • gastrointestinal difficulties, e.g.
    • gastro-oesophageal reflux
  • craniofacial conditions e.g.
    • cleft palate
    • Pierre Robin sequence
  • congenital syndromes, e.g.
    • Prader-Willi
    • Down’s syndrome
  • learning disability

In some combinations, children may experience dysphagia when transitioning into adulthood.

The size of the problem

Infants, children and young people with neurodisability and those born prematurely are most likely to be at risk of dysphagia, but feeding difficulties also occur in typically developing children. Recent research has found the incidence of feeding difficulties is:

  • between 25-45% in a typically developing paediatric population
  • between 31-99% for children with cerebral palsy
  • between 21-44% for children with general neurodevelopmental disabilities
  • between 26.8-40% of infants born prematurely
  • between 68-72% of children with acquired conditions during the acute phase of care.

For references to these statistics, please see our factsheet on Supporting infants, children and young people with feeding and swallowing difficulties.

Adults

Dysphagia in adults can occur as a result of any of the following medical problems:

  • neurological disorders, e.g. 
    • stroke
    • dementia
    • Parkinson’s Disease
    • motor neurone disease
    • multiple sclerosis
    • progressive supranuclear palsy
    • Guillain-Barré syndrome
    • brain tumour
    • subarachnoid haemorrhage
    • Wilson’s disease
    • Polyneuropathy
    • head injury
  • head and neck cancer, e.g. 
    • laryngeal cancer
  • oncology, e.g. 
    • lung cancer
  • cardiopulmonary disorders, e.g. 
    • chronic obstructive pulmonary disease
  • autoimmune disorders, e.g. 
    • HIV
    • lupus
    • rheumatoid arthritis
  • connective tissue disorders, e.g. 
    • scleroderma
  • general medical disorders, e.g. 
    • UTI
  • disorders associated with the elderly, e.g. 
    • cervical osteophytes
  • disorders caused by trauma, e.g. 
    • smoke inhalation
  • vascular disorders, e.g. 
    • Bechet’s disease
  • swallow disorders as a result of surgery, e.g. 
    • base of skull surgery
    • thyroid surgery
  • tracheostomy
    • ventilator dependent individuals, e.g. 
    • post-extubation related dysphagia
  • drug related causes, e.g. 
    • long-term use of some anti-psychotic medications.; 
  • psychogenic causes

The size of the problem

As dysphagia often happens at the same time as other health conditions, it is difficult to be certain of the prevalence rate. However, research has found the following rates of prevalence and incidence of dysphagia is:

  • Between 50-75% of nursing home residents
  • Between 50-60% of head and neck cancer survivors
  • Between 40-78% of stroke survivors – of those with initial dysphagia following stroke, 76% will remain with a moderate to severe dysphagia and 15% with profound dysphagia
  • In 48% of patients undergoing cervical discectomy and fusion
  • In 33% of the people with multiple sclerosis
  • In 27% of those with chronic obstructive pulmonary disease
  • In 10% of acutely hospitalised older people
  • In 5% of adults with a learning disability, 5% of community-based individuals with learning disabilities and 36% of hospital-based individuals.

For references to these statistics, please see our factsheet on Giving voice to people with swallowing difficulties.

Elderly people may experience difficulty eating, drinking and swallowing due to the loss of muscle mass and strength, which is a normal part of the ageing process. This is called sarcopenia and is separate from dysphagia. However, the treatment of it may be similar. 

Can dysphagia be treated?

Treating dysphagia depends on what underlying condition or conditions a person may have. Some people experience dysphagia for only a short period of time, whereas others might have it for a longer period of time.

If dysphagia is not treated appropriately, it can result in choking, pneumonia, chest infections, dehydration, malnutrition and weight loss. It can also make taking medication more difficult and result in hospitals admissions. In the worst cases, dysphagia can result in death. However, many of these instances can be avoided if the dysphagia is treated timely and appropriately.

As well as resulting in medical complications, dysphagia can also lead to a poorer quality of life for the individual and their family. This may be due to embarrassment and lack of enjoyment of food, which can have profound social consequences.

It is important that the treatment of dysphagia is multi-disciplinary to ensure safe and effective outcomes.

Role of speech and language therapy in dysphagia

Speech and language therapists support infants, children and adults who have dysphagia to eat, drink and swallow safely.

They:

  • Play a key role in the diagnosis of dysphagia
  • Help people regain their swallowing through exercises, techniques and positioning 
  • Promote patient safety through modifying the texture of food and fluids, reducing the risk of malnutrition, dehydration and choking
  • Promote quality of life, taking into account an individual’s and their families’ preferences and beliefs, and helping them adjust to living with swallowing difficulties
  • Work with other healthcare staff, particularly dietitians, to optimise nutrition and hydration
  • Educate and train others in identifying, assessing and managing dysphagia, including families and the wider health and care workforce.

Impact of speech and language therapy

Early identification and management of dysphagia by speech and language therapists improves quality of life, and reduces the possibility of further medical complications and death. Improved nutrition and hydration have an impact on physical and mental wellbeing.

In addition, speech and language therapy for those with dysphagia also produces economic benefits and savings for the wider health economy, including through avoided hospital admissions.

Economic impact research has shown that every £1 invested in low intensity speech and language therapy for adult stroke survivors with swallowing problems generates £2.30 in healthcare savings through avoided cases of chest infections.

15% of hospital admissions of people with dementia with dysphagia could be prevented by contributions from a speech and language therapist at an earlier point.

For references to these statistics, please see our factsheet on Giving voice to people with swallowing difficulties.

RCSLT work on dysphagia 

The RCSLT recognises that a system-wide approach is necessary to improve the management of dysphagia as well as the quality of life and outcomes for people living with dysphagia.

The RCSLT therefore works with key partners to ensure the wider health and care system has the appropriate guidance and resources to upskill the workforce to meet the current demand of dysphagia management.

We also work to ensure that the speech and language therapy profession working with dysphagia receives adequate support to continue their key role in dysphagia management.

Please see the current projects page to see a list of our current dysphagia projects.

International Dysphagia Diet Standardisation Initiative (IDDSI) Framework

NB: The RCSLT has been made aware of recent communications via the BDA that stated both the RCSLT and BDA have decided to update the BDA Digest contrary to NHS Improvement (NHSI) recommendations.

This communication was not approved by the RCSLT, by IDDSI or by Dr Ben Hanson (who represents IDDSI on the working group), who were all unaware of it.

It does not accurately reflect the current position of the BDA or the RCSLT.

However, we are now working with the BDA, NHS Improvement and IDDSI through Dr Ben Hanson to update the BDA statement to ensure that it is in line with the Patient Safety Alert that the RCSLT and BDA co-badged with NHS Improvement and is supported by IDDSI.

The International Dysphagia Diet Standardisation Initiative (IDDSI) have published international standardised terminology and definitions for texture modified foods and thickened liquids for people with dysphagia.

About the Framework

The framework consists of a continuum of eight levels (0-7) and includes descriptors, testing methods and evidence for both liquid thickness and food texture levels.

Aim of the Framework

The framework aims to improve clinical safety and efficiency by offering healthcare providers standardised terminology to assist in the development of international collaborative clinical research and to standardise the terminology and consistency of different food providers in order to reduce risk.

Benefits of IDDSI

  • The framework has been developed after much research and collaboration across the world and each level is based on evidence. The current UK descriptors are based on a consensus of expert opinion not research evidence.
  • The framework is a continuum and contains levels for fluids as well as foods. This means that the safety of patients when both eating and drinking is accounted for and assured. Fluids are not included in the UK descriptors.
  • The framework is being adopted across the world and countries currently implementing it include: USA, Australia, Canada, New Zealand, Germany and China to name but a few. This means that when healthcare workers and patients travel from country to country there will be no confusion about the dysphagia descriptors being used and this in turn means that patient safety is assured.
  • If more countries use the same descriptors i.e. IDDSI then the ability to do larger research studies and systematic reviews is much greater and this means that we will be able to generate more robust evidence about the care of patients with dysphagia.
  • The final benefit of implementing the IDDSI framework is that it gives professionals the opportunity to raise the profile of the care of patients with dysphagia.

UK IDDSI Expert Reference Group

The RCSLT belongs to a UK Expert Reference Group which was initially set up by NHS England. Subsequently the chairmanship of the group was transferred to both the RCSLT and the British Dietetics Association (BDA). The group comprises of: RCSLT, BDA, HCA, NACC, BSNA, manufacturers of thickening agents and products designed specifically for people with dysphagia and manufacturers of modified texture pre-prepared meals.

The group spent over a year gathering evidence to determine whether or not to adopt the IDDSI framework. This work included literature reviews, pilots, a pros and cons exercise and surveys of healthcare professionals. Both the RCSLT and the BDA conducted surveys with their memberships on the possible adoption of IDDSI.

Following the comprehensive analysis of this evidence, the results were presented to the RCSLT and BDA.  Both the RCSLT and BDA have independently and formally announced that they support the adoption of the IDDSI framework.

The BDA and RCSLT see the adoption of the IDDSI framework as of great benefit to patients and carers alike for the following reasons:

  • Improvement of patient safety (e.g. when patients, carers and /or healthcare professionals travel from one country to another there will be common international terminology which should mean that patients continue to receive the correct textures and hence remain safe; product labels will also be international).
  • Greater opportunities to collect and evaluate treatment outcomes (due to international standardised terminologies, larger cohorts of patients can be compared in research to evaluate the effects of existing and new treatments).
  • The combination, within one framework or continuum, of descriptors for both texture modified food and fluids – the latter are not currently addressed by the UK descriptors.

Implementation toolkit

The UK Expert Reference group developed an implementation toolkit to assist healthcare professionals to implement the IDDSI Framework safely and efficiently in their local settings.

This includes:

The IDDSI website has a number of resources that local implementation teams may find useful including:

  • published research articles
  • reports
  • posters
  • a general FAQ section
  • information about drink and food testing methods with accompanying videos are available.

YouTube videos

PowerPoint presentation

Case studies

IDDSI newsletter

Sign up to IDDSI’s monthly e-bites to receive the latest information on IDDSI

Resources

For more information read our Dysphagia factsheets

Inter-professional Dysphagia Framework (IDF) 

The Interprofessional Dysphagia Framework (IDF) is an assessable competency framework. It was developed in partnership with other professions to clearly set out the competencies and knowledge required by healthcare professionals and staff working in dysphagia management in different professional settings across the UK.

Videos

Edna’s story - the impact of speech and language therapy

Benefits of FEES (National tracheostomy safety project)

Giving Voice - Communication & Swallowing in the Hospital

 

Giving Voice - Communication & Swallowing in Mental Health

 

Giving Voice - Communication & Swallowing in the Community

 

Adult Speech and Language Therapy at Darent Valley Hospital, Kent, UK

 

 

For more videos visit the RCSLT YouTube channel.

Related topics

Key organisations