Caregiver descriptions of dystonia in cerebral palsy

Authors

• Fayza Jaleel, Washington University School of Medicine in St. Louis
• Alyssa Rust, Washington University School of Medicine in St. Louis
• Shirley Cheung, Washington University School of Medicine in St. Louis
• Toni S. Pearson, Washington University School of Medicine in St. Louis
• Keisuke Ueda, Washington University School of Medicine in St. Louis
• Amy Robichaux-Viehoever, Washington University School of Medicine in St. Louis
• Katie Leger, University of Kentucky
• Keerthana Chintalapati, Washington University School of Medicine in St. Louis
• Danielle Guez-Barber, Research Institute
• Michele Shusterman, The Cerebral Palsy Research Network
• Bhooma Aravamuthan, Washington University School of Medicine in St. LouisFollow

Abstract

Objective: To determine how caregivers describe dystonia in people with cerebral palsy (CP). Methods: In this prospective cohort study, paper surveys were administered to caregivers between September 7, 2021 and October 28, 2021 during CP Center visits at a large tertiary care center. Caregivers were asked to describe involuntary movements triggered by voluntary movement or triggered by tactile stimulation in the people with CP they cared for. Their CP Center medical provider separately assessed people with CP for dystonia. Movement features described exclusively by caregivers of people with CP and dystonia were determined using conventional content analysis. Results: 113 caregivers responded on behalf of 56 people with and 57 people without dystonia. If caregivers noted that both voluntary movement and tactile stimulation triggered involuntary movements, that had a 92% positive predictive value for a dystonia diagnosis. Movement features exclusively described in people with CP and dystonia included: (1) stiffening, tensing, or tightening (15% of respondents); (2) involvement of the head (10%), torso (5%), or feet (5%); and (3) triggers of stretching (12.5%), excitement (5%), or transfers (5%). Interpretation: In addition to a thorough exam, asking caregivers of people with CP to describe involuntary movements triggered by voluntary movement or tactile stimulation may inform clinical dystonia diagnosis.

Document Type

Article

Publication Date

2-1-2024

Notes/Citation Information

Publisher Copyright: © 2023 The Authors. Annals of Clinical and Translational Neurology published by Wiley Periodicals LLC on behalf of American Neurological Association.

Digital Object Identifier (DOI)

10.1002/acn3.51941

Archival?

Archival

Repository Citation

Jaleel, Fayza; Rust, Alyssa; Cheung, Shirley; Pearson, Toni S.; Ueda, Keisuke; Robichaux-Viehoever, Amy; Leger, Katie; Chintalapati, Keerthana; Guez-Barber, Danielle; Shusterman, Michele; and Aravamuthan, Bhooma, "Caregiver descriptions of dystonia in cerebral palsy" (2024). Psychology Faculty Publications. 340.
https://uknowledge.uky.edu/psychology_facpub/340