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

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.

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.

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.

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.