Goals and outcomes for non ambulant children receiving continuous infusion of intrathecal baclofen

Aim: To evaluate the success of goals and compare these to actual outcomes in severely disabled children receiving continuous intrathecal baclofen [ITB]. Method: 37 non ambulant children with severe spasticity were assessed just before implantation of a pump for ITB, and 9 and 18 months afterwards. Three key goals were chosen for treatment by the family and therapist. These were reviewed at the assessments, together with caregivers' views of the outcome of treatment in 14 different aspects. At the first and last assessment, the degree of deformity of the hips and spine were reviewed, and Orthopaedic Surgeons were also asked to predict what surgery would be needed in the next 2 years. Results: The most common successful outcomes were ease of nursing care, better sitting, spasm reduction, more relaxed/better mood, and improved sleep. This was reflected in the goals selected which were therefore realistic for this treatment. All 3 pre-set goals were achieved by 80% of children. Deformities of the hip and spine continued to occur. The predicted number of orthopaedic operations before and after ITB remained unchanged. Interpretation: ITB is a major treatment for children with severe disability and should be undertaken with understanding of what can and cannot be achieved, therefore allowing realistic goals to be set. (c) 2012 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.