Intrathecal baclofen therapy in children: an analysis of individualized goals

Abstract

The most commonly identified goals of parents of children treated with intrathecal (ITB) therapy were: improving ease of dressing, positioning, and transfers. ITB therapy is effective in improving performance and performance satisfaction in children with hypertonia. Score improvements are mainly evident within the first 6 months of therapy.

The Effect of Intrathecal Baclofen in Dyskinetic Cerebral Palsy: The IDYS Trial

“…9 Standardized questionnaires on quality of life or activities and participation, which were available at the time of the study, do not adequately capture the individual problems in daily life of these patients; attainment of individual goals is therefore the most useful and meaningful way to determine treatment effects. Our study population involves severely affected dyskinetic CP patients with little to no motor skills (GFMCS IV and V).…”

“…6 Dystonia and choreoathetosis are frequently present simultaneously in dyskinetic CP, but dystonia is usually more prominent. 9 There is currently inadequate evidence for the effect of ITB in dyskinetic CP on achievement of individual goals related to quality of life, activities of daily life, and participation. 6 When efficacy of oral medication is insufficient, options requiring neurosurgical intervention such as intrathecal baclofen (ITB) treatment or deep brain stimulation (DBS) are the next step in treatment of dyskinetic CP.…”

Beyond body structure in intrathecal baclofen therapy

“…Whilst most of the research evidence for ITB supports an effective reduction in spasticity, patients and their carers typically do no seek ITB for that specific purpose. Goal‐setting using standardized methods such as the Canadian Occupational Performance Measure or Goal Attainment Scaling allow for patient relevant goals, with studies finding most patients with CP undergoing ITB treatment seek improvements related to dressing, positioning and transfers, pain, and comfort …”

Management of tone in children and young people with cerebral palsy. What is the evidence?

“…Descriptive studies of cerebral palsy (CP) consistently classify the majority of affected children as having spastic tone and only around 10% to 15% as being dyskinetic. 1 For most in this latter group the tone is predominantly dystonic, where the movement disorder is characterized by '. .…”

“…Only since the beginning of this millennium is focus shifting towards another approach in which treatment effects are assessed on outcomes that are meaningful for the patient and their caregivers. At present, we are therefore more interested in what treatment effects are on the ICF (International Classification of Functioning, Disability and Health) level of activities and participation, a thought supported by Liew et al 1 Different methods to set and assess goals on the level of activities and participation are available. Liew et al used the Canadian Occupational Performance Measure (COPM).…”