Objective:

To determine how functional goals of care are currently assessed for botulinum toxin injections in people with cerebral palsy (CP)

Background:

Targeted chemodenervation with botulinum toxin injections can help treat focal hypertonicity and improve range of motion in people with CP. Hypertonicity affects the mobility, comfort, and caregiving of people with CP. Individualized goal setting for botulinum toxin injections is critical to tailor treatment towards optimizing functional outcomes.

Design/Methods:

To evaluate how these functional goals are currently assessed, we performed this prospective cohort study comparing the functional goals documented by botulinum toxin injectors versus referring clinicians for people with CP seen between 8/22/2022-2/23/2023 at a single tertiary care center.

Results:

Functional goals were documented by both the injectors and referring clinicians in 45% (n=42/94) of people with an ICD-10 diagnosis of CP (age 2.5-18.3 years old, 80% white, 54.8% GMFCS IV-V). Agreement on functional goals between the clinician and the injector occurred only 37% of the time. The top two family-cited functional goals were “easier walking/improve gait pattern” (12.2% of families) and “improve standing/weight bearing” (10.4%). 39% of total goals cited by families were not focused on ambulation with “easier dressing/diapering” (10%) and “lessen pain/discomfort” (8.5%) as the top two non-ambulation focused goals. For independently ambulatory people, the most commonly cited goal was “easier walking/improve gait pattern” (21%). For non-ambulatory people, the most commonly cited goal was “easier dressing/diapering” (15%).

Conclusions:

Individualized function-focused goals for botulinum toxin injections are infrequently and inconsistently documented across care team members. We must improve how clinicians and injectors elicit desired goals from people with CP and their caregivers, a necessary aim to optimize functional outcomes from botulinum toxin treatments.