Understanding the reasons for delayed referral for intrathecal baclofen therapy in pediatric patients with severe spasticity.

Abstract

Intrathecal baclofen therapy (ITB) has been used in the treatment of spasticity and dystonia. In our pediatric movement disorder clinic, we noted a delay in referral of patients for consideration of ITB. Often, only after years of failed medical therapy, a baclofen pump is considered. This study attempts to investigate the prevalence, length and causes of the delay. A retrospective, outcome analysis was performed. We conducted a survey of 30 pediatric patients who received baclofen pumps between the ages of 5 and 23. Patients were divided into two groups (before and after ITB approval by the US Food and Drug Administration in 1996) (FDA/Center for Drug Evaluation and Research, 2014; Ridley and Rawlins, J Neurosci Nurs 38:72-82, 2006; Medical Advisory Secretariat, Ont Health Technol Assess Ser 5:1-93, 2005). Information was collected regarding their onset of spasticity, attempted treatments, pump referral, satisfaction, and resulting change in the quality of life. There was a delay in referral in most cases investigated. Average time to baclofen pump implantation, after initial onset of spasticity, was 5.14years (group A) and 11.7years (group B). Out of the subjects who reported diminished effects or no effect of pharmacological treatment, 93% of these respondents reported that ITB had a dramatic long-lasting effect on their spasticity. Of 30 patients, 28 reported effectiveness of ITB, and 26 of 30 subjects reported an improved quality and ease of life. Despite the limitations of this subjective retrospective analysis of outcomes and delay in referral, the opinions of the parents and caregivers should be considered. Earlier referral for ITB therapy may better treat severe spasticity in pediatric patients.