Title: The effects of night positioning on sleep, postural deformity and pain in children and young people with cerebral palsy - an exploratory study.
Funder: Department of Health (England)

Abstract: Background Two thirds of children aged 2-16 years with cerebral palsy have sleep disturbance compared with less than 1% in typical children. These children are also vulnerable to pain and postural deformity, including hip dislocation, which commonly results in surgery. Poor quality of sleep, pain and postural problems significantly affect the quality of life of the child and their parents/carers. Over the last decade the provision of sleep systems for children has increased. Some evidence exists to suggest the combined use of postural management equipment in lying, sitting and standing can result in reduced hip dislocation. However, there is limited evidence of the effect of night positioning using sleep systems on postural deformity and sleep and the effect on pain has not been investigated. Aims This is an exploratory study to support the development of a full randomised controlled trial. It will help to identify the adherence to using sleep systems, size of effect and indicative sample size for a future RCT. The primary research aim is to investigate the impact of night lying position equipment on the quality of sleep, pain and postural deformity. The research objectives are to determine the effect of a sleep system on: 1. Sleep quality using actigraphy, oximetry, sleep diaries and Chailey sleep questionnaire. 2. Pain using the Paediatric Pain Profile and the Brief Inventory of Pain. 3. The development of musculo-skeletal defomity using Reimer’s hip migration percentage, lower limb range of movement, Cobb angle and need for surgery. Plan of Investigation Fifty children / young people with cerebral palsy, aged 3-16 years, not walking independently (GMFCS IV–V), and not currently using a sleep system, will be recruited to the study. Children will be randomly allocated into one of two groups: • with a sleep system for night time positioning • with standard care (without provision of a sleep system) Measures of sleep, pain and deformity (listed above) will be recorded at baseline and at six monthly intervals over two years. Analysis (involving ANCOVA and independent t tests) will be undertaken to determine the sample size and inform the protocol for a subsequent RCT. Adherence and other issues asociated with the use of the equipment will also be examined. ???? Potential Impact The desired outcome is to identify whether a full RCT is needed and would be feasible in a larger population. If so this exploratory study will inform the design of such an RCT particularly in terms of the appropriateness of the outcome measures and the required sample size. The relevance of this line of investigation is that it will help to identify whether the provision of sleep systems can offer children and young people with cerebral palsy: • Reduced pain • Improved sleep quality • Slowed or maintained postural deformity • Reduced need for surgery and hospitalisation Sleep systems are relatively inexpensive compared with other intereventions. Therefore, there is potentially a significant saving to the NHS if sleep systems are found to be effective.


Research activity codes: 6.3 MEDICAL DEVICES
Health categories: NEUROLOGICAL