Satisfaction of individuals treated long-term with continuous infusion of intrathecal baclofen by implanted programmable pump.

Abstract

Purpose: To investigate the perspective of the individual receiving intrathecal baclofen (ITB) or his/her caregiver concerning its effects and to describe characteristics of those that were satisfied or not satisfied.

Methods: After IRB approval, potential subjects were identified who had undergone ITB pump implantation at least 1 year prior to the study. One hundred subjects/caregivers were interviewed by phone. Interview consisted of a scripted questionnaire to obtain subject/caregiver opinions about changes in function and caregiver assistance, as well as satisfaction with ITB. Medical records were reviewed to collect information including diagnosis, ITB related surgeries and medications.

Results: Subjects ranged in age from 5-42 years and 88 had a diagnosis of cerebral palsy. Improvement was noted in the following areas: positioning 69%, transfers 58%, dressing 69% and toileting/hygiene 51%. Fifty-four per cent reported reduction in startle movements. Sleep was improved in 43% and comfort in 53%. Twenty-two subjects experienced 32 events related to the ITB hardware or surgery. Only 12% indicated they would not choose to undergo the procedure again.

Discussion: Generally, subjects and their caregivers were satisfied with the results after ITB pump implantation. A majority reported improvements in positioning, transfers, dressing, toileting/hygiene and comfort.