Outcomes of Neurosurgical Tone Management

Boston Children's Hospital100 enrolled

Overview

Patients with spastic/dystonic quadriplegia (GMFCS IV/V) are often severely disabled by their tone, and require surgical tone management to improve quality of life, allow for better function, improve comfort, and range of motion. This has historically been limited to Intrathecal Baclofen (ITB) pumps, which are effective for up to 85% of patients but carry significant morbidity / complications and are not appropriate for many patients. More recently, combined dorsal/ventral rhizotomy (CR) has emerged as an alternative means for tone control, a one-time surgery with no required hardware implantation. However, more information is needed regarding long-term outcomes of this procedure in addition to comparative outcomes of ITB. This information will lead to improved patient selection, counseling, and care. This is a prospectively enrolled, single-center study, involving survey administration and clinical observation of outcomes pre- and post-surgery.

Study Type

OBSERVATIONAL

Enrollment

100

Conditions

Spastic/Dystonic Quadriplegia Cerebral Palsy (CP)

Eligibility

Sex: ALLMin age: 6 YearsMax age: 25 Years

Medical Language ↔ Plain English

Inclusion Criteria: * Any patients undergoing intrathecal baclofen pump insertion or combined dorsal ventral rhizotomy at Boston Children's Hospital. * Must be at least 6 years of age at time of enrollment Exclusion Criteria: \-

Locations (1)

Outcomes

Primary Outcomes

Improved Spasticity Score

We will study changes in Spasticity using the Modified Ashworth Scale in participants over the course of this study.

Time frame: From enrollment to 5 years

Improved Dystonia Score

We will use the Barry Albright Dystonia Scale to measure changes in dystonia in participants over the course of this study.

Time frame: From enrollment to 5 years.

Secondary Outcomes

Overall Quality of Life Improvements

We will use the CP-Child survey to measure quality of life changes in participants over the course of this study. Specifically looking at trends in caregiver satisfaction with hygiene, and comfort.