Cerebral Palsy in Under 25s: Assessment and Management
National Institute for Health and Care Excellence. (2017).
London (United Kingdom): National Institute for Health and Care Excellence, (NG62), 1-475.
This is a clinical practice guideline providing recommendations on the assessment and management of cerebral palsy in children and young people up to 25 years of age.
National Guideline Alliance (United Kingdom); National Institute for Health and Care Excellence (United Kingdom)
<p>This document was reviewed with the following:</p>
<ul>
<li>National Institute for Health and Care Excellence. (2017). <em>Cerebral Palsy in Children and Young People (Quality Standard 162)</em>. Retrieved from <a title="https://www.nice.org.uk/guidance/qs162/resources/cerebral-palsy-in-children-and-young-people-pdf-75545597081797" href="https://www.nice.org.uk/guidance/qs162/resources/cerebral-palsy-in-children-and-young-people-pdf-75545597081797">www.nice.org.uk</a></li>
</ul>
<p>The data in guideline can be found elsewhere in the Evidence Maps. See the Associated Articles section below for more information.</p>
<div>During routine reviews, children and young people with cerebral palsy should be assessed for concerns about speech, language, and communication—including speech intelligibility. If such concerns arise, then individuals should be referred for specialist assessment by a multidisciplinary team including a speech-language pathologist</div>
<div>Provide counseling and education to children and young people, and their parents or caregivers, about hearing loss that can be associated with cerebral palsy. Information may include, but not limited to, the prevalence (e.g., more common in different types of cerebral palsy) and that regular ongoing hearing assessment is necessary.</div>
<div>Children and young people with cerebral palsy who need support in understanding and producing speech should be considered for augmentative and alternative communication systems (e.g., pictures, objects, signs and symbols, speech generating devices).</div>
<div>If a child or young person with cerebral palsy is suspected of having difficulties eating, drinking or swallowing, then a clinical assessment should be conducted as first-line investigation to determine the safety, efficiency, and enjoyment of eating and drink. A clinical assessment should incorporate the following:</div>
<ul>
<li>a relevant clinical history, including a history of any previous chest infections; and </li>
<li>observation of eating and drinking in a typical mealtime environment by a speech-language pathologist trained to assess and treat dysphagia.</li>
</ul>
<div>“Do not use videofluoroscopy or fibroscopic endoscopy for the initial assessment of eating, drinking and swallowing difficulties in children and young people with cerebral palsy” (p. 189). The specialist multidisciplinary dysphagia team should consider videofluoroscopy if</div>
<ul>
<li>there is an uncertainty about safety during feeding and swallowing following specialist clinical assessment;</li>
<li>there are recurrent chest infections without overt signs of aspiration;</li>
<li>there is a deterioration in feeding or swallowing ability with increasing age (especially after adolescence);</li>
<li>there is an uncertainty modifying food textures (e.g., use of thickeners, purees)</li>
<li>caregivers need support in decision-making and understanding eating, drinking, and swallowing difficulties.</li>
</ul>
<div>Provide counseling and education to children and young people, and their parents or caregivers, about communication difficulties that can be associated with cerebral palsy, such as prognosis of speech development and need for augmentative and alternative communication.</div>
<div>Children and young people using augmentative and alternative communication should be regularly monitored for their progress and to ensure that the interventions continue to appropriately address their needs.</div>
<div>The individualized treatment plan for eating, drinking, and swallowing difficulties in children and young people with cerebral should consider the caregivers’ understanding, knowledge, and skills. The individualized plan should consider the following:</div>
<ul>
<li>postural management and positioning while eating</li>
<li>modifying fluid, food textures, flavors</li>
<li>feeding techniques (e.g., pacing, utensil placement)</li>
<li>equipment (e.g., specialized feeding utensils)</li>
<li>optimizing the mealtime environment</li>
<li>strategies for managing behavioral difficulties associated with eating and drinking</li>
<li>strategies for developing oral motor skills</li>
<li>communication strategies</li>
<li>modifications to accommodate visual or other sensory impairments that affect eating, drinking, and swallowing</li>
<li>the training needs of the people who care for the child or young person particularly outside the home.</li>
</ul>
<div>Family, caregivers, staff, and other people involved in the care of children and young people with cerebral palsy should be provided with individualized training in communication techniques.</div>
<div>Outcome measures should be meaningful to the client and their caregivers, whether they are individualized goals achieved or have a clinical or functional impact on the improvement of eating, drinking, and swallowing.</div>
<div>Early intervention is important to improve the communication skills of children and young people with cerebral palsy.</div>
<div>A multidisciplinary team that includes a speech-language pathologist should conduct the specialist assessment of communication skills, including speech intelligibility, in children and young people with cerebral palsy.</div>
<div>A child or young person with cerebral palsy should be referred to a local multidisciplinary dysphagia team if there are clinical concerns such as:</div>
<ul>
<li>coughing, choking, gagging, altered breathing pattern, or change in color while eating or drinking;</li>
<li>recurrent chest infection;</li>
<li>regularly stressful mealtimes; and/or</li>
<li>prolonged meal duration.</li>
</ul>
<div>Additional recommendations for videofluoroscopy are as follows:</div>
<ul>
<li>Only perform videofluoroscopy in a center with a specialist multidisciplinary team who have experience and competence in conducting it with children and young people with cerebral palsy.</li>
<li>“Do not routinely perform videofluoroscopy when considering starting enteral tube feeding in children and young people with cerebral palsy” (p. 189).</li>
</ul>
<div>Children or young people with cerebral palsy—along with their parents, caregivers, and other family members—should be involved in developing the strategies and goals of interventions to improve eating, drinking, and swallowing.</div>
<div>Interventions to improve speech intelligibility (e.g., posture, breath control, voice production, rate of speech) should be offered to children and young people with cerebral palsy if they meet the following criteria:</div>
<ul>
<li>have a motor speech disorder and some intelligible speech; <strong>and</strong></li>
<li>speech is the primary means of communication; <strong>and</strong></li>
<li>can engage in the intervention.</li>
</ul>
<div>Ensure that children and young people with cerebral palsy have access to a to a local integrated multidisciplinary team (MDT), including speech-language pathology, that can meet their individual needs within agreed care pathways and provide appropriate expertise through a local network of care. The MDT should also ensure access to services in local and regional network as appropriate, including vision and hearing specialists.</div>
<div>Parents and caregivers should be advised that intra-oral devices have not demonstrated improvement to eating, drinking, and swallowing in children and young people with cerebral palsy.</div>
<div>Children and young people with cerebral palsy and ongoing difficulties in feeding and swallowing should be ensured access to tertiary specialist assessment including advice from other services (e.g., pediatric surgery, respiratory pediatrics).</div>
<div>If ongoing problems arise with the augmentative and alternative communication system, refer the child or young person to a specialist to tailor the interventions to their individual needs including their cognitive, linguistic, motor, hearing, and visual abilities.</div>
