Spinal Cord Injury
Quality Improvement and Implementation Science
This abstract examines the real-world impact of onabotulinumtoxinA treatment in adult patients with spasticity on caregiver burden over 2 years from the Adult Spasticity International Registry (ASPIRE) study.
Objective : Examine the real-world impact of onabotulinumtoxinA treatment in adult patients with spasticity on caregiver burden over 2 years from the Adult Spasticity International Registry (ASPIRE) study.
Design : Prospective, observational study (NCT01930786).
Setting : International clinical sites.
Participants (or Animals, Specimens, Cadavers):
Adult patients with focal spasticity across multiple etiologies.
Interventions : OnabotulinumtoxinA at the clinician’s discretion.
Main Outcome Measure(s) : 15-item Bakas Caregiver Outcomes Scale (BCOS; self-reported at enrollment and 5±1 weeks following patient treatment).
730 patients (54 years, 52% female, 77% white) received ≥1 dose of onabotulinumtoxinA, and the majority had moderate to severe spasticity at baseline. 37% (n=269) were naive to botulinum toxins for treatment of spasticity. For the treatment-naive patient population, n=122 associated caregivers completed the BCOS at baseline. The majority of caregivers (58 years, 61% female, 72% white) were the spouse or live-in partner of the patient (60%) or were another family member (33%). Approximately half of the caregivers were employed (39% full-time, 11% part-time) and one-third were retired (34%). In comparison with their BCOS score at baseline, caregivers (n=24; post-treatment 2) reported statistically significant improvements (p<0.05) in the categories of time for family activities, level of energy, emotional well-being, time for social activities with friends, and general health following onabotulinumtoxinA treatment for the patient.
Conclusions : In ASPIRE, caregivers of patients treated with onabotulinumtoxinA for spasticity reported less burden. Reduced burden was associated with an increase in caregiver quality of life, as indicated by increased time for family and friends, more energy, and improvements in emotional and general health. ASPIRE provides valuable, real-world data on onabotulinumtoxinA utilization and effectiveness in patients, as well as the impact of treatment on caregiver burden.