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National Guideline Alliance (UK). Cerebral palsy in under 25s: assessment and management. London: National Institute for Health and Care Excellence (NICE); 2017 Jan. (NICE Guideline, No. 62.)
Review question: In children and young people with cerebral palsy, which communication systems (alternative or augmentative) are effective in improving communication?
16.1. Introduction
Communication involves 2 or more people working together to send and receive messages. It draws on motor, cognitive, linguistic and social skills. In children with cerebral palsy the development of language understanding is particularly influenced by learning disability (intellectual disability), and expressive speech skills by motor impairment. The association between severe functional disability and motor speech disorders (dysarthria) means that some children and young people do not develop sufficient intelligible speech to meet their communication needs. This has led to the use of augmentative and alternative methods of communication (AAC), often alongside speech.
AAC systems encompass manual signing (usually simplified vocabularies derived from British Sign Language) and graphic systems, such as pictures or symbols. Graphic systems can be presented in paper-based books or charts, or on computer-based speech-generating devices operated through a keyboard, touchscreen, switches or eye-gaze technology. AAC can be used to support language understanding and/or expressive skills.
Communication intervention may also be directed at the child or young person’s communication partners – families, carers and school staff – focusing on strategies to support communication whether verbal, non-verbal or AAC.
There is considerable variation in clinical practice around the timing of introducing AAC systems to children and young people with cerebral palsy, the types of systems recommended and the provision of training. There is also variable uptake of AAC by families and carers of children and young people. The Committee therefore felt it important to consider the effectiveness of communication programmes and AAC in this population.
Interventions aimed at increasing speech intelligibility have been addressed separately, although that evidence report also encompasses interventions involving communication systems.
The objective of this review was to assess what is the clinical and cost effectiveness of communication systems to improve communication.
16.2. Description of clinical evidence
Three observational studies were included in this review (Hochstein 2003, McConachie & Pennington 1997, Udwin & Yule 1990). Of these, 1 study is a longitudinal study that assessed the acquisition of 2 AAC methods: Blissymbols (graphic symbols representing words) and Makaton signs (manual signs representing words) in 2 groups of children with cerebral palsy (Udwin & Yule 1990). The results were reported at initial assessment at 10.5 months, and until the end of follow-up at 1.5 years after the initial assessment.
Another study (McConachie & Pennington 1997) focused on training methods (‘My Turn to Speak’ workshops), compared with no training, given to 33 teachers and assistants in order to improve the facilitation of communication among 9 students with cerebral palsy. Change in communication support strategies by the participants was assessed through video recordings of interactions with the target group of children and young people in naturally occurring situations. A range of strategies that helped any form of communication (speech, AAC or non-verbal) were credited, including postural management, use of open questions, responsiveness to the child or young person’s attempts to communicate, and repair strategies when communication was unintelligible. Results were available for follow-up at 1 month and 4 months.
One case-control study (Hochstein 2003) investigated 2 speech-generating devices (SGDs) and had participants below the sample size requirement stated in the protocol of 30 participants and above. The study was included, as interventions using SGDs were not found for the sample sizes of 30 participants or more. However, the evidence obtained from this study should be used with caution as the very low sample size (n=7) could be an unreliable representation of the population and the absolute effect size could not be calculated. This study investigated the error rate among 7 children with cerebral palsy when using Dynavox2c, a dual-level display SGD (user selects category of vocabulary and then accesses specific vocabulary represented by pictures) and Alphatalker, a single-level display SGD (all vocabulary, represented by pictures, is visible at all times). The error rates using these SGDs were tested twice. The median error rates and ranges were calculated and reported in this review (but not reported in the study). The study compares results to children without cerebral palsy, which is not reported in this review.
A total of n=56 children and young people with cerebral palsy and n=33 teachers and assistants were included in this review.
Evidence from these is summarised in the clinical GRADE evidence profile below (Table 66, Table 67, Table 68 and Table 69). See also the study selection flow chart in Appendix F, the complete GRADE profiles in Appendix H, study evidence tables in Appendix J and the exclusion list in Appendix K.
Table 66
Blissymbols intervention for improving communication in cerebral palsy.
Table 67
Makaton intervention for improving communication in cerebral palsy.
Table 68
‘My Turn to Speak’ training vs control group.
Table 69
Dynavox2c vs Alphatalker.
16.3. Clinical evidence profile
The clinical evidence profiles for this review question (communication systems) are presented in Table 66, Table 67, Table 68 and Table 69.
16.4. Evidence statements
16.4.1. Blissymbols and Makaton signs
16.4.1.1. Communication production
Very low-quality evidence from 1 study showed that all children made progress with learning signs or symbols for communication, although there was wide variation within each group, and the vocabulary and grammatical structures used by children in both groups remained limited.
16.4.1.2. Change in communication production
No evidence was retrieved for this critical outcome.
16.4.1.3. Change in sign and/or symbol production
No evidence was retrieved for this outcome.
16.4.1.4. Impact on family: stress, coping
No evidence was retrieved for this outcome.
16.4.1.5. Parental satisfaction
No evidence was retrieved for this outcome.
16.4.1.6. Participation
No evidence was retrieved for this critical outcome.
16.4.1.7. Quality of life
No evidence was retrieved for this outcome.
16.4.2. ‘My Turn to Speak’ training vs no training
16.4.2.1. Communication production
No evidence was retrieved for this outcome.
16.4.2.2. Change in communication production
Very low-quality evidence from 1 study reported that teacher training improved the quality of facilitation of communication 4 months after the training among 9 children or young people with cerebral palsy who used AAC. No change was reported for 1 month after the training.
16.4.2.3. Change in sign and/or symbol production
No evidence was retrieved for this outcome.
16.4.2.4. Impact on family: stress, coping
No evidence was retrieved for this outcome.
16.4.2.5. Parental satisfaction
No evidence was retrieved for this outcome.
16.4.2.6. Participation
No evidence was retrieved for this critical outcome.
16.4.2.7. Quality of life
No evidence was retrieved for this outcome.
16.4.3. Dynavox2c vs Alphatalker
16.4.3.1. Communication production
Low-quality evidence from 1 study provided error rates (reported) produced for both Dynavox2c (a dual-level display) and Alphatalker (single-level display) was available. The median value error rate produced by 7 speech-impaired CP children was higher for Dynavox compared to Alphatalker and the range of values overlapped. However, because of the small sample size (n=7), absolute effect and imprecision could not be calculated and results should be taken with caution.
16.4.3.2. Change in communication production
No evidence was retrieved for this critical outcome.
16.4.3.3. Change in sign and/or symbol production
No evidence was retrieved for this outcome.
16.4.3.4. Impact on family: stress, coping
No evidence was retrieved for this outcome.
16.4.3.5. Parental satisfaction
No evidence was retrieved for this outcome.
16.4.3.6. Participation
No evidence was retrieved for this critical outcome.
16.4.3.7. Quality of life
No evidence was retrieved for this outcome.
16.5. Economic evidence
No health economic evidence was retrieved for this outcome.
16.6. Evidence to recommendations
16.6.1. Relative value placed on the outcomes considered
The Committee agreed that participation and change in communication production were critical outcomes for this evidence review. Important outcomes for this review were: communication production, change in communication production, impact on family (stress and coping), parental satisfaction, participation and quality of life.
16.6.2. Consideration of clinical benefits and harms
Very low-quality evidence was identified from 1 study that was considered to be a proxy for change in communication production. This study reported change in the strategies used to support children’s communication by teachers and classroom assistants. In addition, no evidence was identified with regard to impact on family stress, coping, parental satisfaction, participation, quality of life or how the introduction of AAC changes the functional communication skills in children or young people with cerebral palsy.
However, some evidence included in the speech intelligibility evidence review (see section 15) suggested that there may be benefit from interventions addressing aspects of communication development, such as language understanding and expressive communication in its widest sense (including functions such as making requests and participating in conversations) using a range of non-verbal methods, including augmentative and alternative communication.
The Committee highlighted that AAC systems may have a role in children and young people with low speech intelligibility to support language understanding and to provide a means of expression. The Committee recommended referral of children and young people with cerebral palsy and difficulties in speech, language and communication for specialist assessment in such situations. Factors that impact on communication include sensory, perceptual and motor skills, intellectual level, language understanding, social interaction abilities and the environment. For this reason, multidisciplinary assessment would be appropriate. If, based on this assessment, it was thought the children and young people could benefit from an augmentative or alternative communication intervention then the child or young person should be referred on to a specialist AAC service to tailor intervention to the individual’s need. The Committee noted that children and young people who were then using AAC systems would need to be monitored to ensure interventions continue to be appropriate for their needs.
The Committee noted that because of the range of factors influencing communication the process of selecting the most appropriate forms of AAC for an individual child or young person was complex. The level of knowledge, skill and receptiveness to AAC in the family, carers, school or other environments was a further consideration in the choice of AAC system and the design of interventions to support the development of effective communication. Collaborative goal setting, with the involvement of families, carers and schools, in this area of clinical practice requires high levels of skill and experience to manage expectations. Multidisciplinary specialist AAC services are best placed to address these complexities. The Committee did not make recommendations on the use of specific AAC interventions as the evidence presented did not allow useful comparisons of different systems. The 1 study that reported on 2 different systems (Makaton signing and Blissymbols) involved groups that differed significantly with regard to functional severity and intellectual ability. It was also noted that Blissymbols are now rarely used in the UK and that other symbols systems that are more compatible with computer-based communication programmes are more likely to be used.
The Committee highlighted the importance of training in the use of various AAC interventions for the children and young people, their families, carers and the team around the child. This could be a long-term commitment, particularly as children’s and young people’s skills, communication needs, communication partners and environments change over time as they move into adulthood. Children and young people with significant learning disabilities may not benefit from the use of formal systems, such as symbols or speech generating devices, but would require interventions aimed at families, carers and the team around the child to support communication.
It was the Committee’s view that many children with cerebral palsy find communication difficult because they have little or no clear speech, resulting in social isolation. Given that research evidence in this area is largely limited to single-case studies, with a focus on acquisition of skills (for example, recognising symbols or making requests), the Committee agreed that addressing the clinical and cost effectiveness of early interventions for managing communication difficulties in children with cerebral palsy should be a priority research recommendation for this guideline.
16.6.3. Consideration of economic benefits and harms
The Committee were unable to recommend any specific AAC method because any intervention would be individualised to the child or young person with cerebral palsy and could involve several methods of communication.
To prevent unnecessary referrals to specialist AAC services, the Committee agreed that an initial clinical assessment should be undertaken by: a speech and language therapist; and other members of the multidisciplinary team with the necessary competencies in postural management, sensory, perceptual and cognitive assessment, to decide if the benefits of AAC system justify the resources to administer them. According to NHS Reference Costs 2015, the cost per consultant-led attendance with a speech and language therapist is £101 (WF01B, Non-Admitted Face to Face Attendance, First Attendance, Service Code 652).
16.6.4. Quality of evidence
No randomised controlled trials (RCTs) were found that assessed AAC methods in children and young people with cerebral palsy. One RCT (Romski 2010) was identified and excluded because of its mixed population of children with other conditions and evidence for cerebral palsy alone could not be extracted from the published data. The authors were contacted for further information but further details were not received.
Very low-quality evidence was available from 2 observational studies (McConachie &Pennington 1997, Udwin & Yule 1990) and included both children and young people with cerebral palsy and familiar communication partners (teachers and assistants).
No evidence was identified regarding the effectiveness of speech-generating devices. Consequently, a case control study (Hochstein 2003) with just 7 cerebral palsy participants (a smaller sample size than that stipulated in the protocol) was included. The median values and ranges of errors using 2 such devices were calculated and reported. However, the Committee recognised that this evidence should be treated with caution because of its low quality and sample size.
16.6.5. Other considerations
Additional evidence on the impact of AAC was retrieved as part of the evidence review for ‘Speech intelligibility’ (see section 15). Evidence was presented to the Committee, mainly from single-case or small group studies, on changes in children’s and young people’s ability to label objects and make requests using AAC. Because of the overlap between the evidence reports for ‘Speech intelligibility and communication systems’, the Committee produced 1 set of recommendations focusing on communication.
The use of AAC is well established in the UK, RCTs comparing intervention and no intervention would be considered unethical. The heterogeneity of children and young people with cerebral palsy, their conversational partners and communication environments means that a broad evaluation of the effectiveness of AAC raises significant challenges. The Committee noted the lack of studies focusing on the effectiveness of interventions addressing particular aspects and stages of speech, language and communication, with an emphasis on facilitating the participation of children and young people and families in real-life situations.
The recommendations related to this evidence review were based on the evidence and the Committee’s clinical experience.
16.6.6. Key conclusions
A range of AAC interventions is available for children and young people with limited intelligible speech. The evidence presented did not allow comparisons of different systems. Although the Committee recognised that there was very limited good-quality evidence to support AAC interventions for children and young people with cerebral palsy, they believed that certain approaches can be effective for particular individuals. For that reason they recommended a specialist assessment when there are concerns with access to interventions, particularly in the areas of speech intelligibility, augmentative and alternative communication, and training for families, carers and professionals in strategies to support all forms of communication. They noted that no evidence had been identified to suggest there were likely harmful effects associated with AAC interventions for these children and young people.
16.7. Recommendations
- 63.
Consider augmentative and alternative communication systems for children and young people with cerebral palsy who need support in the understanding and producing speech. These may include pictures, objects, symbols and signs, and speech generating devices.
- 64.
If there are ongoing problems with using augmentative and alternative communication systems, refer the child or young person to a specialist service in order to tailor interventions to their individual needs, taking account of their cognitive, linguistic, motor, hearing and visual abilities.
- 65.
Regularly review children and young people who are using augmentative and alternative communication systems, to monitor their progress and ensure that interventions continue to be appropriate for their needs.
- 66.
Provide individualised training in communication techniques for families, carers, preschool and school staff and other people involved in the care of a child or young person with cerebral palsy.
- Improving speech, language and communication: communication systems - Cerebral p...Improving speech, language and communication: communication systems - Cerebral palsy in under 25s: assessment and management
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