Extrait

Background and study aims Movement disorders are a collection of conditions which affect the speed, fluency, quality, and ease of movement. They are typically divided into two categories: hyperkinetic (disorders of excessive movement) and hypokinetic (disorders in which there is slowness or absence of movement. Hyperkinetic movement disorders (HMD) include a range of involuntary movement, including dystonia (muscle spasms which cause twisting, repetitive movements and poor posture), chorea (jerky movements which are irregular and unpredictable), athetosis (muscle contractions causing writhing movements), myoclonus (sudden contraction of a group of muscles) and tremor (uncontrolled shaking). Conditions such as these can make everyday activities such as washing and dressing very difficult, making it very hard for those affected to look after themselves, which can affect their independence later in life. Many children with HMD undergo a type of treatment called deep brain stimulation (DBS) which can help to ease the symptoms and reduce pain caused by abnormal movements. Children and young people with HMD who are able to get involved in daily activities often have difficulties doing so, even after DBS. However, very little is known about other aspects that may influence children’s and young people’s ability to improve their skills required for living and learning. Treatments such as occupational therapy (working with a therapist who can help to maintain, regain or improve independence using different techniques and equipment) could potential help children with HMD when offered with DBS. Cognitive orientation to occupational performance (CO-OP) is a type of occupational therapy which helps people who have difficulties performing everyday skills. The aim of this study is to find out whether the CO-OP approach can be used to treat children with HMD and if this treatment approach is acceptable to families. Who can participate? Patients aged between 6 and 21 who have a hyperkinetic movement disorder What does the study involve? Participants are randomly allocated to one of two groups. Participants in the control group continue to receive treatment as usual for the duration of the study, which might include equipment provision, occupational therapy or physiotherapy. Participants in the intervention group are visited by an occupational therapist trained in CO- OP for up to 10 sessions, lasting for 45 minutes to one hour, once or twice a week at the child’s home. All participants are assessed at the start and end of the treatment and at 3 months follow up. What are the possible benefits and risks of participating? There is a possibility that participants will benefit from a reduction in the HMD symptoms. There are no notable risks involved with taking part in this study. Where is the study run from? Evelina Children's Hospital (UK) When is the study starting and how long is it expected to run for? September 2014 to February 2017 Who is funding the study? National Institute for Health Research (UK) Who is the main contact? Miss Farhiya Ashoor

Critère d'inclusion

• Topic: Children, Neurological; Subtopic: Children (all Diagnoses), Neurological (all Subtopics); Disease: All Diseases, Neuro-muscular and Encephalitis

Liens

• isrctn
• ictrp