Caregiver descriptions of dystonia in cerebral palsy

Fayza Jaleel, Alyssa Rust, Shirley Cheung, Toni S. Pearson, Keisuke Ueda, Amy Robichaux-Viehoever, Katie Leger, Keerthana Chintalapati, Danielle Guez-Barber, Michele Shusterman, Bhooma Aravamuthan

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)242-250
Number of pages9
JournalAnnals of Clinical and Translational Neurology
Volume11
Issue number2
DOIs
StatePublished - Feb 2024

Bibliographical note

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

ASJC Scopus subject areas

  • General Neuroscience
  • Clinical Neurology

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