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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, what interventions are effective for managing difficulties in registering and processing of sensory and perceptual information?
26.1. Introduction
Many children and young people with cerebral palsy present with difficulties with registering and processing of sensory information and of perception, which may lead to functional difficulties that are not explained by alterations in muscle tone alone. There is insufficient recognition of how impairment in the motor system impacts on sensory processing and perception in cerebral palsy, and vice-versa. Such difficulties may include challenges in organising, planning and carrying out movements, difficulties with navigating environments, dressing, self-care, handwriting, attention and concentration, as well as understanding multistep instructions.
Difficulties may arise from impairment of 1 or more of the sensory systems as part of the cerebral palsy: vision, hearing, touch, taste, smell, balance (the vestibular system) or position feedback / proprioception (knowing where one’s body parts are in space and in relation to one another). Or it may arise from difficulty in the way that sensory information is registered, processed and percieved. These difficulties sometimes remain unrecognised or may not be identified until school age, when children begin to learn to read and write and are expected to organise themselves within the classroom environment. This can lead to frustration and unwanted behaviours as children may fall behind their peers without strategies in place to move forwards; in some cases, sensory and perceptual difficulties can be more limiting on function and independence than physical difficulties.
There is limited recognition and understanding of sensory and perceptual difficulties in children and young people with cerebral palsy despite their impact on function, participation and wellbeing. The aim of this evidence review is to assess interventions that are effective in managing the difficulties in registering and processing sensory information and perception in children and young people with cerebral palsy. The following sensory domains will be targeted:
- tactile
- vestibular
- proprioception (somatosensory)
- visual
- auditory
- gustatory
- olfactory.
26.2. Description of clinical evidence
Four studies were included in this systematic review that aimed to identify interventions that are effective for the management of difficulties in processing sensory and perceptual information in children and young people with cerebral palsy.
Three randomised controlled trials (RCTs) (James 2015, Kuo 2016, Law 2011) and 1 pre- and post-intervention study (Bumin & Kayihan 2001) reported on the 4 following comparisons:
- sensory-perceptual motor training versus home-based programme
- child-focused versus context-focused approach
- web-based multimodal therapy versus standard care
- Hand-arm Bimanual Intensive Therapy (HABIT) + tactile training versus HABIT alone.
All studies included children and young people with cerebral palsy, and sample sizes ranged between 20 and 270 participants. Follow-up times varied between immediate post-intervention measurement and 9 months.
A range of scales was used in the studies to report on the following outcomes indicated in the protocol:
- improvement in processing sensory and perceptual information
- goal attainment scales
- quality of life, reported as participation and activities of daily living.
The evidence did not show results for improvement in psychological wellbeing (anxiety and depression) or wellbeing of parents and/or carers.
For full details, see the review protocol in Appendix E. See also the study selection flow chart in Appendix F, study evidence tables in Appendix J and the exclusion list in Appendix K.
See Appendix H for the GRADE profiles and Table 112, Table 113, Table 114 and Table 115 for the summarised GRADE clinical evidence profile of the included studies.
Table 112
Clinical evidence summary for sensory-perceptual motor training compared to home-based programme.
Table 113
clinical evidence summary for child-focused versus context-focused approach.
Table 114
clinical evidence summary for web-based multimodal therapy compared to standard care.
Table 115
clinical evidence summary for hand-arm intensive manual therapy compared to hand-arm intensive manual therapy + tactile training.
26.3. Clinical evidence
26.4. Economic evidence
No economic evaluations of interventions to manage the difficulties in registering and processing of sensory and perceptual information were identified in the literature search conducted for this guideline. Full details of the search and economic article selection flow chart can be found in Appendix E and Appendix F, respectively.
This review question was not prioritised for de novo economic modelling. However, the interventions under consideration vary in the resources and costs needed, for example sensory interventions could be implemented at home by the family and/or carer, whereas regular occupational or psychological sessions would incur high staff costs. According to NHS Reference Costs 2015, the cost per occupational therapy attendance is £67 (WF01A, Non-Admitted Face to Face Attendance, Follow-up, 651) while the cost per psychotherapy attendance is £174 (WF01A, Non-Admitted Face to Face Attendance, Follow-up, 713).
26.5. Evidence statements
26.5.1. Sensory-perceptual motor training versus home-based programme
Very low-quality evidence from 1 study with 41 participants found that there is no clinically significant difference between sensory-perceptual motor training and a home-based programme when measuring improvement in processing sensory and perceptual information using the Ayres Southern California Sensory Integration Test (ASCSIT).
26.5.2. Child-focused versus context-focused approach
Moderate-quality evidence from 1 study with 128 participants found that there is no clinically significant difference between child-focused and context-focused approach when measuring: 1) gross motor function; 2) improvement in self-care or mobility using the Paediatric Evaluation of Disability Inventory (PEDI) scale; 3) improvement using the Family Empowerment Scale (FES), and; 4) improvement in participation using the Assessment of Pre-school Children Participation Scale (ACPCS), at either 6 months or 9 months follow-up.
26.5.3. Web-based multimodal therapy versus standard care
Low-quality evidence from 1 study with 270 participants found that there is a clinically beneficial effect of web-based multimodal therapy compared to standard care for improvement in: 1) motor and processing skills (both measured with the Assessment of Motor and Processing Skills (AMPS) scale) and 2) the Canadian Occupational Performance Measure (COPM) at 3 months follow-up.
The same study reported no clinically significant difference between web-based multimodal therapies compared to standard care when measuring visual perceptual skills at 3 months follow-up.
26.5.4. Hand-arm Bimanual Intensive Therapy (HABIT) + tactile training versus HABIT alone
Low-quality evidence from 1 study with 20 participants found that there is a clinically beneficial effect of tactile training in addition to manual therapy compared to manual therapy alone for improvement in Grating OrientationTask (GOT).
The same study showed no clinically significant difference between tactile training in addition to manual therapy compared to manual therapy alone when measuring stereognosis, the 2-point discrimination, and cutaneous sensation levels (using Semmes-Weinstein Monofilaments [SWM] test).
26.6. Evidence to recommendations
26.6.1. Relative value placed on the outcomes considered
The aim of this review was to identify interventions that are effective for the management of difficulties in processing sensory information and of perception in children and young people with cerebral palsy. The Committee identified the following as the critical outcomes for decision-making:
- improved sensory and perceptual function
- health-related quality of life
- improved psychological wellbeing.
26.6.2. Consideration of clinical benefits and harms
The Committee acknowledged the evidence presented and was not aware of any important study missed, however, they also agreed that the population of interest was not always well defined in the included studies.
With regards to the interventions reported in the included studies, the Committee agreed that they did not reflect current practice in the population of children and young people with cerebral palsy. Studies looking at the following areas of management were also sought:
- sensory integration
- goal-directed therapy
- activity focussed therapy/
- task-orientated therapy
- occupational therapy
- computer based programmes
- neuro-psychological and educational psychological support (behavioural training).
The Committee noted that the evidence was of too low quality and non-specific to allow them to recommend any particular therapeutic approach. Equally, they thought that the specific interventions reviewed were best applied in a research rather than a clinical setting.
However, the Committee noted some key principles that could be applied to rehabilitation or treatment plans and agreed to incorporate these in the recommendations for this review. The Committee agreed not to recommend any particular interventions or associated resources used in current UK clinical practice as these would be individualised to the patient. This is because sensory and perceptual problems vary considerably in their complexity and presentation.
Firstly, the Committee wanted to highlight that children and young people with cerebral palsy may have sensory and perceptual issues that compound their physical difficulties. However, they noted that in practice it is often difficult to separate signs and symptoms of sensory and motor impairment. For this reason, it is important for clinicians to not only focus on motor difficulties during assessment, but to consider sensory difficulties and their possible impact on function, activity and participation. Given the complexity of most cases and the number of comorbidities involved, the assessment of such problems is not easy in cerebral palsy, and therefore undertaking research and measuring clinically beneficial effects is challenging. The Committee wanted to reiterate the importance of regular assessment of children with motor disabilities, in particular the need for considering and looking for potential sensory processing problems. The Committee highlighted how there was considerable variation in understanding and practice with regards to this aspect of management. They also noted how clinical research should be supported along with improved sensory processing assessment and training of staff. Therefore, they agreed that a recommendation was needed to inform what this is, why it is important, and what the impact is.
The Committee recognised that there was a paucity of evidence about specific clinical interventions that work for this population, and decided that this should also be explained to families. In particular, the web-based approach presented was carried out in a limited population of children with Gross Motor Function Classification System (GMFCS) levels I and II. Therefore, though they considered it was important to develop its potential further, the Committee did not feel confident to generalise this intervention to the whole cerebral palsy population. The Committee however, noted that interventions that reflect on a combination of challenges such as motor, sensory, communication and cognition should be functionally oriented in their implementation.
The Committee discussed the importance of a multidisciplinary approach to these difficulties, as well as the need to allow the young person to choose and be aware of their choices and what the problems may be. In addition, they recognised the importance of explaining to parents and/or carers why their child may be having these difficulties, for example by explaining that many factors usually contribute to the overall picture and it is not only because of motor control, muscle tightness or weakness.
The Committee discussed that a wide variety of interventions without clear evidence base were being used in clinical practice in children and young people with cerebral palsy and these difficulties. Therefore, the Committee agreed to develop a research recommendation to assess the clinical and cost effectiveness of interventions to manage specific sensory and perceptual difficulties.
26.6.3. Consideration of economic benefits and harms
The Committee highlighted that parents and/or carers sometimes focus on low-quality evidence to request interventions that are costly and potentially ineffective. Consequently, the Committee made a recommendation to explain to parents and/or carers that there is a lack of evidence to support specific interventions.
On the other hand, the Committee agreed that if sensory and perceptual problems were not identified and managed appropriately, there may be further downstream difficulties that could, for example, negatively impact on areas such as eating and drinking, communication and education. The Committee recognised that when sensory and perceptual problems are targeted correctly, therapy can improve a patient’s health-related quality of life, potentially leading to a cost-effective use of NHS resources.
The Committee acknowledged that there was strong evidence to suggest web-based interventions were effective in managing the difficulties in registering and processing sensory information and perceptual difficulties. They also agreed web-based interventions could be implemented at home at zero monetary cost, providing a cost-effective intervention. However, the Committee noted web-based interventions would be limited to GMFCS levels I and II.
Consequently, the Committee recommended a functional approach led by occupational therapists, physiotherapists and/or psychologists. The Committee were unable to describe the resource use these sessions would incur as the healthcare professional leading those sessions and the frequency they are performed would depend on the complexity and goals of the patient.
Overall, provided that sensory and perceptual problems are correctly identified, the Committee agreed that the value of an individualised approach outweigh the costs of that approach.
26.6.4. Quality of evidence
Quality of the evidence ranged between moderate and very low, due mainly to selection bias, detection bias and performance bias. When possible, clinical beneficial effects were always reported and captured in the evidence statements. However, when the data did not allow for calculation or use of MIDs, the statistical significance was reported in the statements instead.
26.6.5. Other considerations
The recommendations related to this evidence review were based on the evidence and the Committee’s clinical experience.
26.6.6. Key conclusions
The Committee concluded that many children and young people with cerebral palsy will have sensory or perceptual difficulties; these should be considered when functional difficulties are greater than those expected from the child’s or young person’s physical examination.
Sensory and perceptual difficulties can compound physical difficulties and should be considered within the context of motor and cognitive function.
A functional, goal-orientated, individualised programme should be developed in partnership with the child or young person and/or their parents and/or carers to take into account the complexity and variety of the way in which these difficulties present.
There is a lack of evidence to support specific interventions; parents and/or carers should be aware of this and that some interventions are based on no evidence when making decisions about different types of treatment.
26.7. Recommendations
- 117.
Explain to children and young people with cerebral palsy and their parents or carers that difficulties with learning and movement may be exacerbated by difficulties with registering or processing sensory information, which can affect function and participation. Sensory difficulties may include:
- primary sensory disorders in any of the sensory systems, such as processing of visual or auditory information (for example, difficulties with depth perception may affect the ability to walk on stairs) (see recommendations 125 to 130)
- disorders of sensory processing and perception, such as planning movements or being able to concentrate and pay attention.
- 118.
For children and young people with cerebral palsy who have difficulties with registering and processing sensory information:
- agree a functional, goal-orientated, individualised programme in partnership with parents or carers
- explain to parents or carers that there is a lack of evidence to support specific interventions.
- Management of difficulties in registering and processing of sensory and perceptu...Management of difficulties in registering and processing of sensory and perceptual information - Cerebral palsy in under 25s: assessment and management
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