Guideline for the Identification and Management of Swallowing Difficulties in Adults with Learning Disability

This guideline was developed by a multidisciplinary expert panel: Wright D et al with the support of an unrestricted grant from Rosemont Pharmaceuticals Ltd. See bottom of page for full disclaimer.

Introduction

• Adults with learning disabilities experience a higher incidence of health problems than the general population. The National Patient Safety Agency (NPSA) identified dysphagia, characterised by either difficulty initiating a swallow (oropharyngeal dysphagia), or a feeling that foods and/or liquids are hindered in the passage from the mouth to the stomach (oesophageal dysphagia), as a key area of risk
• Dysphagia, which might result from either one or a multitude of medical problems including stroke, progressive neurological conditions, and poor oral health, can lead to malnutrition, dehydration, impaired quality of life, aspiration, choking, and death
• Dysphagia can disrupt the normal process of feeding, eating and drinking at any or all of the phases of swallow. Pharyngeal phase dysfunction can also increase the risk of aspiration, which can result in serious and potentially fatal respiratory infection. At the very least, failure to recognise dysphagia can result in impaired nutrition and poorer quality of life
• Adults with learning disabilities are at greater risk of feeding, eating, and drinking difficulties than healthy individuals. Identifying which phases of the swallow are affected can help the development of management strategies to maximise safety and minimise risk during feeding

Diagnosis and Management of Swallowing Difficulties

• As adults with learning disabilities may be unable to communicate effectively, it is essential to discuss their eating and drinking abilities with their carer
• In addition, clinicians might observe patients during a meal in order to evaluate the risk of aspiration (see Table 1, below)
• Speech and language therapists (SLTs) should also conduct a thorough review of their patient's clinical history in order to identify risk factors associated with the development of swallowing difficulties (see Box 1)
• In instances where dysphagia is suspected, a more formal diagnosis should be made

Table 1: Features Suggesting Risk of Aspiration

Treatment and Management of Swallowing Difficulties

Oropharyngeal Dysphagia

• In most cases, pharmacological and surgical interventions are inappropriate for managing the neurological and neuromuscular aetiologies of oropharyngeal dysphagia. However, other management strategies (detailed below) have proved invaluable
• Modifying of food consistency:
  • texture:
    • modifying texture can aid the manipulation of solid food in the oral cavity of patients with oral preparatory or oral phase difficulties
    • British Dietetic Association recommends a hierarchy of textures according to need: fork-mashable diet, pre-mashed diet, thick puree, and thin puree
    • type of food texture required is dependent upon the oral–motor and swallowing needs of the patient, and which texture best reduces the risk of aspiration
  • viscosity:
    • thickeners can be used to reduce the risk of aspiration. They help the patient create a cohesive bolus, thus aiding oropharyngeal control and slowing transit time in the pharynx
• Postural change:
  • limited motor ability affects:
    • the initiation of oral–motor skills
    • the breathing pattern required for eating and drinking
    • the swallow mechanism
    • effective gut motility
  • providing postural stability, such as jaw support, during a mealtime might improve oral preparatory and oral phase stability
• Swallowing therapy and re-education:
  • patients should be encouraged to be independent during mealtimes—this can enable an adult with learning disabilities to control the speed and pace of the meal
  • hand-over-hand prompting when using utensils might maximise opportunities for independent eating and drinking
• Alternative feeding methods:
  • for example, percutaneous endoscopic gastrostomy (PEG), are necessary if eating and drinking difficulties are so severe that oral feeding is not safe or if it is not possible to consume adequate nutrition orally
  • hygiene is essential to ensure that oral residue does not build up, cause infection, and contribute to aspiration-related illnesses

Oesophageal Dysphagia

• The primary goals of treatment for oesophageal dysphagia are to reduce the impact of aspiration and to provide symptom relief. Treatment may include the use of drugs (e.g. botulinum toxin injections), surgery and/or endoscopic therapy

Administration of Medications to Patients with Swallowing Difficulties

• Choosing the best method of drug delivery can improve the willingness of a patient to take their medication. Healthcare professionals need to consider the appropriateness of the selected method of delivery, patient safety, and the legality of any recommendations that are made

Appropriateness

• The problem of tablet swallowing may be overcome by simple adjustments, which is important given the need to reassure this patient group, e.g. changing the tablet from a circular to a torpedo shape. If a patient is unable to swallow a tablet whole, owing to problems with the oral phase, the appropriateness of chewing prior to swallowing should be considered
• Chewing, crushing, or dispersing a tablet increases the amount of contact between the active drug and the tongue surface; this can cause a previously palatable tablet to become inedible or unpleasant.If patients are chewing a tablet prior to swallowing, then they should be asked whether the taste of the tablet is acceptable
• Adults with learning disabilities might struggle to communicate this information, and so communication passports prepared by SLTs may be used
• If tablets cannot be swallowed, an alternative liquid medicine or route of administration (patches, orodispersibles, suppositories) should be considered
• Thickeners should be used with caution as they may alter the effect of the medicine
• Where licensed liquids are unavailable then unlicensed ‘specials’ might be available. However, licensed preparations should be considered in most clinical cases before unlicensed products

Safety

• Tablets and capsules are frequently designed to optimise how and where the drug is released into the body (e.g. gastro-resistant coatings and modified-release designs) or are coated to mask the flavour (e.g. film and sugar coatings)
• In addition to altering the taste, crushing, dispersing, or chewing tablets/capsules before swallowing can affect how and where the drug is released into the body. The consequences of such actions should always be considered. Modified-release preparations should never be altered as the resultant dose release can increase the chance of side-effects and then provide a period of time when there is not enough in the body for it to be effective

Legality

• The Human Medicines Regulations 2012 allow only independent prescribers to authorise unlicensed administration of medicines to patients; however, crushing, dispersing and mixing can be undertaken by a person acting under the written instructions of an independent prescriber
• If the only option is crushing, dispersing, or compounding medication, then the independent prescriber should assume responsibility by recording their authorisation in the patient’s prescription, medical, and care notes. A pharmacist should only dispense this request if satisfied that the form prescribed is suitable to be amended

Continual Patient Review

• Medication reviews should be conducted regularly and a structured review process should be created in order to improve care, reduce risk, and address compliance issues. The ‘NO TEARS’ tool (see Box 2, below) may be of use

Involvement of Carers and Patients

• It is essential to involve patients and their carers in care planning and management. Non-compliance with management strategies for swallowing difficulties, by both patients and their carers, is common
• Adults with learning disability may find it hard to understand the implications of their swallowing difficulties; it is, therefore, important that their carers recognise the need to follow management guidance in order to reduce the risk of aspiration

Care Plans

• Management/care plans should:
  • be individualised and include advice provided by a SLT and a dietician
  • outline the patient’s needs, identify plans or goals to address those needs, make clear the actions needed to achieve the goals, and evaluate the management process
  • be reviewed regularly to ensure they continue to meet the patient’s needs—refer to the NPSA website for templates of care plans, and mealtime information sheets to facilitate accurate documentation

Referral Pathway

The following algorithm provides an overview of the referral process, and how patients might be managed at each stage.

Click on the thumbnail to expand the algorithm