Recommendations for research

The guideline committee has made the following recommendations for research. The committee's full set of research recommendations is detailed in the full guideline.

1 Optimising nutritional status in children with cerebral palsy

What is the clinical and cost effectiveness of early interventions for optimising protein, energy and micronutrient nutritional status in children with cerebral palsy?

Why this is important

Most children with cerebral palsy have clinically significant oral motor dysfunction, and around 20% of children with cerebral palsy are undernourished. Provision of high-calorie and high-protein diets, either orally or via tube feeding, is well established to improve weight gain. Supplementation with micronutrients (such as vitamin D) is also necessary to ensure nutritional adequacy and prevent deficiencies. There is a lack of evidence about whether a more proactive approach to nutrition support in young children with cerebral palsy would improve growth and other aspects of clinical and developmental function. There is also insufficient evidence to determine whether higher intake of individual nutrients may have additional benefits; for example, there is emerging evidence that increased protein intake improves muscle strength, albeit in a different population (healthy older adults). A multicentre randomised controlled trial is needed that assesses the clinical and cost effectiveness of early interventions to optimise protein, energy and micronutrient nutritional status in this population.

2 Managing communication difficulties in children with cerebral palsy

What is the clinical and cost effectiveness of interventions for managing communication difficulties in children with cerebral palsy?

Why this is important

Communication is an essential life skill that is recognised as a human right. Some children with cerebral palsy find communication difficult because they have little or no clear speech, resulting in social isolation. Alternative and augmentative communication (including signing, symbols, communication charts and computer-based speech generating devices) is now an established part of clinical practice, but the evidence base to inform good practice is very limited. 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). A multicentre randomised controlled trial is needed to look at the effectiveness of interventions that include alternative and augmentative communication methods and carer training in improving the participation of children at different stages of communication development.

3 Recognition and early management of pain in children and young people with cerebral palsy

Does use of pain assessment tools by parents or carers improve the recognition and early management of pain in children and young people with cerebral palsy in a community setting?

Why this is important

Pain and discomfort are increasingly recognised as having a major impact on quality of life for children and young people with cerebral palsy and their parents or carers. A variety of assessment tools have been developed to quantify qualitative pain behaviours in children and young people with cerebral palsy who cannot communicate. The use of these tools in hospital to help identify signs and symptoms of pain and discomfort associated with specific interventions has become widespread. These tools may also help parents or carers recognise pain and discomfort in children and young people with cerebral palsy in community settings. Reducing pain and discomfort outside hospital is of clear importance to help with all aspects of quality of life, including learning, development and clinical wellbeing. A prospective cohort study is needed that looks at whether use of pain assessment tools by parents or carers improves the recognition and early management of pain.

4 Association between treating infections in pregnancy and rates of cerebral palsy

What is the association between different antibiotic regimes to treat genito-urinary and respiratory tract infections in pregnant women and subsequent rates of cerebral palsy in children?

Why this is important

Treating infection in pregnancy is of prime importance for the woman's health. In large population studies of pregnant women, chorioamnionitis, other genito-urinary infections and respiratory tract infections that result in admission to hospital are significant risk factors for the child being diagnosed with cerebral palsy. The mechanisms are uncertain, but include cytokine-induced damage to developing white matter leading to periventricular leukomalacia and sensitisation of the fetal brain to damage from hypoxia. A prospective multicentre study is needed that looks at the effects of different antibiotic regimes for treating genito-urinary infections in pregnant women on subsequent rates of cerebral palsy.

5 Prevalence of mental health problems in young people (up to the age of 25) with cerebral palsy

What is the prevalence of mental health problems in young people (up to the age of 25) with cerebral palsy?

Why this is important

A number of factors predispose young people with cerebral palsy to an increased risk of mental health problems, which will have a marked impact on their quality of life and challenges of care. However, there is a lack of evidence about the prevalence of such problems in this population. Improved guidance would allow greater access to suitable services for young people with cerebral palsy. In addition, given the link between mental and physical health, improvements in mental healthcare could potentially influence physical health and comorbidities. A prospective cohort study or cross-sectional study is needed that looks at the prevalence of mental health problems in this population.

ISBN: 978-1-4731-2270-3

  • National Institute for Health and Care Excellence (NICE)