We have posted previously about eating, drinking and swallowing difficulties experienced by people with learning disabilities, where we have looked at the effectiveness of training, support to get thickness modification right and the implications of planning to reduce choking risk.

We also looked at the need for support at mealtimes in a study which found that dysphagia was an important factor in the need for mealtime support with nearly 15% of adults needing such support

In this current study, the authors were keen to consider the relationship between difficulties with eating drinking and swallowing with mortality or primary and secondary healthcare use among adults with learning disabilities.

They set out to look at the annual incidence of eating drinking and swallowing (EDS) difficulty related healthcare use, other health problems and all-cause mortality in adults with learning disabilities and such problems.

They also wanted to see if they could establish the proportion of overall healthcare use that was attributable to eating, drinking and swallowing difficulties.

Method

What they did was to carry out an exploratory, descriptive cohort study. They did two surveys one year apart, where the participants were adults over 18 with learning disabilities who needed support for any eating, drinking or swallowing problem. They identified these participants from those known to local specialist services in the whole of Cambridgeshire and North Essex.

They gathered baseline data from face-to-face interviews and used a structured interview form to gather cross-sectional information regarding five groups of variables:

• sociodemographic characteristics
• disability-related characteristics
• mealtime support needs
• indicators of dysphagia
• additional illnesses/disabilities

They also used the form to get information on what had happened in the twelve months before the baseline in relation to:

• numbers of GP visits (in general and for EDS problems)
• numbers of emergency and planned hospital visits (for EDS
• problems), number of emergency hospital visits not related to eating/drinking issues
• specialist input for EDS problems.

One year later they carried out follow-up interviews by phone, asking for the same information that had been sought for the baseline

For the follow up they added questions about new dysphagia diagnoses, and also established if the person had died, what the date and cause of death had been.

They carried out a range of statistical analyses on the data to describe and examine associations between variables.

Findings

In the period studied (2009) the team recruited 142 adults with mild to profound learning disabilities with a need for any type of mealtime for the baseline survey. However, at one year follow up, it was only possible to look at data for 127 people as eight people had died and seven could not be contacted.

The mean age of the sample at baseline was 46.6 years old

• Diagnosed dysphagia was not associated with age or the severity of the learning disability
• Diagnosed dysphagia was however, strongly associated with the aetiology of the learning disability, affecting about a quarter of people with Down syndrome but nearly two-thirds of those with cerebral palsy

At follow up – one year later:

• nearly a third of participants required more mealtime support than at baseline
• four people had newly diagnosed dysphagia
• four  people had newly inserted percutaneous endoscopic gastrostomy (PEG) or percutaneous endoscopic jejunostomy tubes.
• Nearly all participants had one or more consultations with a GP each year
• in the first year, 20% had one or more emergency hospitalisations.
• One-fifth of this population’s primary healthcare use was directly attributable to eating, drinking and swallowing related ill health.
• Respiratory infections were the most common cause of morbidity
• Respiratory problems were the immediate cause of all eight deaths
• Participants had a high annual incidence of death (5%)

Standardized mortality ratio was 267 which suggests their observed mortality was more than twice that expected in the general population of adults with learning disability.

Conclusion and comment

This is an interesting study which throws up some important issues. It is a descriptive and exploratory study which is working with a relatively small population so the findings must be treated with some caution in terms of their generalisability.

However, as the authors point out, because they recruited a specific group, it was possible to interrogate the issues at hand in a lot more detail than would have been possible with a larger more gerenalised dataset.

Also, as their recruitment strategy had both strengths and weaknesses – on the one hand, because they did not rely on recruiting from specialist referrals for clinically diagnosed dysphagia it enabled them to identify people with a broad range of eating, drinking and swallowing problems.

They did however recruit from specialist service providers so were working with an administrative population.

The study however looks at an area that is under-researched, and identifies some areas for practice development and research that the authors recommend, including:

• The inclusion of a control group with no confirmed eating, drinking and swallowing problems to enable the incidence and prevalence of healthcare use and illnesses to be seen in better context.
• A renewed call for vigilance in carers and healthcare providers in relation to repeat respiratory infections which were found once again to a significant cause of morbidity and sometimes mortality for adults with learning disabilities and eating, drinking and swallowing problems

They also call for all Annual Health Checks offered to adults with learning disabilities to include questions about respiratory infections and eating, drinking and swallowing function to focus attention on current or potential problems in this area.

Link

The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs, C. M. Perez, S. L. Ball, A. P. Wagner, I. C. H. Clare, A. J. Holland & M. Redley in Journal of Intellectual Disability Research, online early doi: 10.1111/jir.12167 [abstract]