Intrathecal baclofen therapy: Impact on quality of life and caregiver burden in a paediatric cohort

Abstract

Objective: The effective management of spasticity and dystonia in paediatric neurological conditions is challenging. The presence of severe spasticity and dystonia commonly results in associated pain, difficulties with daily cares, poor sleep hygiene, difficulties with feeding and positioning and reduced quality of life. For children whose hypertonia cannot be adequately managed, intrathecal baclofen therapy (ITB) may be considered as a treatment option. Reduced caregiver burden and improved quality of life are a primary focus of ITB therapy. This study investigated the effect of ITB on caregivers perspectives on ease of cares, activity limitation and well-being in children with cerebral palsy (CP) and other neurological conditions. Design: Longitudinal, prospective, multicentre study. Method: Forty nine paediatric patients who underwent ITB therapy between 2011 and 2017 in Australian tertiary hospitals were eligible for inclusion. Data was obtained from 40 children (mean age at implant 11.2 years, range 4.1 to 16.2 years, SD 3.36). Thirty three patients had bilateral CP, four a genetic progressive condition, one Hereditary Spastic Paraparesis and one a hypoxic brain injury. The predominant motor type was spasticity (55%) and dystonia (45%) with 37.5% presenting with mixed tone. Classifications or their equivalents included GMFCS level: III=1, IV=18, V=21; MACS level: I=1, III=10, IV=8, V=21 and CFCS level: I=4, II=5, III=12, IV=6 and V=13. The cohort had multiple comorbidities (mean 2.4, range 0 to 7) including intellectual disability 72%, dysphagia 44% and epilepsy 36%. The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), the primary outcome measure, was utilised at baseline, 6 and 12 months post ITB pump implant. Pre and post implant change was also investigated by predominant motor type grouping and GMFCS levels. Results: There was a significant overall improvement in aspects of quality of life and caregiver burden following ITB therapy, with a mean change from 41.84 (SD 14.82) at baseline to 51.71 (SD 13.77) at 12 months (p<0.0001). The more significant improvements occurred in the personal care, positioning, transferring and mobility and comfort and emotions domains (p<0.0001) of the CPCHILD. Conclusion: Current evidence to demonstrate effectiveness of ITB in paediatric populations beyond spasticity and dystonia reduction is limited. Inclusion of a valid quality of life measure ensures clinicians measure the impact of interventions most meaningful to families. This study provides evidence that ITB improves aspects of quality of life of children with complex movement disorders and reduces caregiver burden.L6316058782020-05-04 <br />