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This study aims to investigate the prevalence and characteristics of dysphagia among adults with intellectual disabilities (ID) referred to speech and language therapy for swallow assessment, providing information on the demographic characteristics, referral trends, co-occurring health conditions and reasons for referrals highlighting the complex health-care needs of this population.

This study used a standardised patient data extraction method over a six-month period involving 74 adults with ID referred to speech and language therapy for swallow assessment.

This study revealed a high prevalence of dysphagia among adults with ID referred to speech and language therapy for swallow assessment. Increasing age and severity of ID were associated with an increased likelihood of swallowing difficulties. Co-occurring health conditions such as mobility difficulties, epilepsy and gastrointestinal conditions were prevalent, suggesting that adults with ID and swallowing difficulties are often living with complex health conditions. Choking incidents and hospital admissions were primary reasons for referral.

This study stresses the pressing need for strategies to mitigate risks associated with choking incidents and hospital admission among this vulnerable population. Possible limitations include a reliance on referral and the focus being on a single service over a short period which may limit generalisation to the wider ID population.

This study emphasises the need to understand each person’s unique profile of health needs and the value of a specialised speech and language therapy service.

The importance of increasing awareness among caregivers and medical experts is highlighted.

The findings underscore the importance of tailored assessment, caregiver involvement and heightened interdisciplinary awareness to effectively manage dysphagia in individuals with ID.

This study aims to evaluate the quality of a speech and language therapy (SLT) swallow service provided to adults with intellectual disability (ID) by exploring the process and outcome factors; to explore the process of what is done to and for the patient including identifying dysphagia, choking and pneumonia risk, typical interventions and management; examine clinical outcomes; and explore the relationship of outcomes with risk factors, satisfaction with the service and the impact of the service on the number of choking incidents and admissions to acute hospital with swallow concerns.

There were three specific work packages: (1) collecting and scrutinising patient data from the clinical record for adults with ID referred to the SLT swallow service over a six-month period. The researcher created aims, defined the limits to achieve the aims, designed a standardised data collection form, set out where data was in the clinical record, piloted, set limits for collection and trained reviewers; (2) gathering experience and satisfaction surveys from patients, caregivers and referrers over the six-month study period; and (3) monitoring choking adverse incident reports and hospital admission with swallow concerns for the whole ID population.

Choking and hospital admission were the main reasons for referral, and pneumonia risk significantly predicted dysphagia impairment. The research highlighted common dysphagia risk factors, interventions and recommendations for this population. The SLT swallow service is a quality service that is highly valued by patients, their caregivers and referrers. The service achieves significant clinical improvements, helps identify dysphagia and provides management to reduce associated risks.

This study found common dysphagia risk factors, interventions and recommendations; it also found that the therapy outcome measures/Royal College of Speech and Language Therapy online outcome tool was a meaningful outcome measure, and that pneumonia risk significantly predicted dysphagia impairment, all of which could inform the identified dysphagia research priorities for this population.

Naming usual care in treatment and recommendations could help ensure a fair service and could help form quality indicators. People with ID, their caregivers and staff generated valuable ideas for improvement, and further involvement work could create a logic model for the service. Other future work could explore the use of screening tools, increase multidisciplinary team working, improve access to instrumental assessments, raise awareness of swallowing and promote important oral health and medication reviews. By using this information to shape quality improvement work and policies, one can work toward addressing high health-related inequalities and preventable deaths associated with dysphagia in this vulnerable population.

It may be useful to raise awareness that adults with ID age earlier and that one should not exclude them from older people’s services because of an age threshold, often set higher than their life expectancy. This study highlighted a possible inequality of access issue for adults with ID who do not have direct care or day care staff. There is a need to increase access to awareness training so caregivers and general practitioners can recognise swallow difficulties and know how to make a referral for a swallow assessment.

Overall, the evaluation of the swallow service to adults with ID suggests that SLT have a quality service for adults with ID that is highly valued and provides significant clinical improvements. By building on these strengths, SLT could extend the reach, influence and impact of their services to help those adults with ID who have emerging swallow difficulties or who do not access the service.