To determine the effects of Intrathecal baclofen treatment as it specifically relates to goals of performance and goals of satisfaction of performance that are set by parents or caregivers of patients (children/adolescents) who experience difficulties with various functional mobility tasks (e.g. transfers, positioning, dressing, etc.) due to spasticity and/or dystonia (which are common results of Cerebral Palsy, Traumatic Brain Injury, Spinal Cord Injury, etc.).
Children/Adolescents in one of six pediatric hospitals across Australia who are receiving Intrathecal baclofen therapy.
Ages ranging from: 4 years, 1 month to 15 years, 11 months
Mean Age: 11 years, 1 month
Number of patients with Cerebral Palsy: 19
Number of patients with a genetic condition: 4
Number of patients with a brain injury: 2
Number of patients with spasticity-predominant presentation: 10
Number of patients with dystonia-predominant presentation: 2
Number of patients with combined spasticity and dystonia: 11
Number of patients with brain injury (not classified): 2
Authors analyzed attainment of individualized goals via COPM forms which were filled out by patients’ parents.
Participants were recruited from six pediatric hospitals throughout Australia; all participants were receiving Intrathecal baclofen treatments at one of the six hospitals.
Children and adolescents up to age receiving Intrathecal baclofen therapy in Australia before their 16th birthday.
Patients who had elective or routine Intrathecal baclofen pump replacement during the research term/period.
Each parent was allowed to choose up to 5 goals
Most common goals: Improve ease of Dressing (72%), Improve ease of Positioning (56%), Improve ease of Transfers (48%), and Movement related (less tripping/falling while walking, improved independence with joystick use and wheelchair control, ease of standing in standing frame) (48%).
The data was collected over 5 years (12/31/09-12/31/14).
Canadian Occupational Performance Measure (COPM)
Standardized assessment used to measure change in self perceived performance and satisfaction of that performance over a period of time.
The modified pediatric version of this assessment was given to the parents of the patients being studied to fill out.
Scores were assessed at baseline, and 6 months and 12 months following pump insertion.
The patients received continuous Intrathecal baclofen therapy throughout the course of the study.
Assessment of Goals:
The parents of 25 total children identified 112 goals total.
16 children had 5 goals
7 children had 4 goals
1 child had 3 goals
1 child had only 1 goal
Using the COPM parents scored their child’s progress as follows:
Baseline to 6 months:
Average Performance-clinically significant improvement
Satisfaction of Performance-clinically significant improvement
• Only two parents expressed less than clinically significant decrease in satisfaction of performance scores
• Increase in satisfaction of performance was much greater than Increase in average performance
6 months to 12 months (16 out of 18 parents reassessed)
Average of Performance- remained clinically significant
Satisfaction of Performance- remained clinically significant; high scores reported but no clinically significant changes from baseline to 6 month scores
• Increase in satisfaction of performance remained much greater than Increase in average performance
It was found that high performance scores are positively correlated with high satisfaction rates; this finding can aid clinicians with educating patients and their families about the types of activities that are commonly improved by Intrathecal baclofen therapy.
Use of standardized assessment.
Small sample size
Possible biases may interfere with average performance and satisfaction of performance scores
Although clinically significant scores were more apparent in the first six months of therapy than the remaining months, it is important to recognize that clinically significant improvements remained constant at the 6 and 12 month marks. Authors found clinically significant improvements in average performance and performance satisfaction scores. It is beneficial to know that Intrathecal baclofen therapy helps to decrease the mobility dysfunctions in those experiencing spasticity and dystonia, however, the long-term effects of this remain unknown. The COPM is a meaningful tool that assists clinicians with working together with this patient population and their families to guide therapies that are most useful and meaningful to them.
Liew, P. Y., Stewart, K., Khan, D., Arnup, S. J., & Scheinberg, A. (2018). Intrathecal baclofen therapy in children: An analysis of individualized goals. Developmental Medicine & Child Neurology, 60(4), 367-373. doi:10.1111/dmcn.13660