Caregiver descriptions of dystonia in cerebral palsy
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. Caregiv...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2024-02-01
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| Series: | Annals of Clinical and Translational Neurology |
| Online Access: | https://doi.org/10.1002/acn3.51941 |
| _version_ | 1797311736203706368 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Fayza Jaleel |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-08T02:05:04Z |
| format | Article |
| id | doaj.art-ad778660bad24c218d768afc87f82716 |
| institution | Directory Open Access Journal |
| issn | 2328-9503 |
| language | English |
| last_indexed | 2024-03-08T02:05:04Z |
| publishDate | 2024-02-01 |
| publisher | Wiley |
| record_format | Article |
| series | Annals of Clinical and Translational Neurology |
| spelling | doaj.art-ad778660bad24c218d768afc87f827162024-02-13T18:30:43ZengWileyAnnals of Clinical and Translational Neurology2328-95032024-02-0111224225010.1002/acn3.51941Caregiver descriptions of dystonia in cerebral palsyFayza Jaleel0Alyssa Rust1Shirley Cheung2Toni S. Pearson3Keisuke Ueda4Amy Robichaux‐Viehoever5Katie Leger6Keerthana Chintalapati7Danielle Guez‐Barber8Michele Shusterman9Bhooma Aravamuthan10Division of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USADivision of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USADivision of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USADivision of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USADivision of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USADivision of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USADivision of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USADivision of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USADivision of Child Neurology, Department of Pediatrics Children's Hospital of Philadelphia Philadelphia Pennsylvania USAThe Cerebral Palsy Research Network Salt Lake City Utah USADivision of Pediatric Neurology, Department of Neurology Washington University School of Medicine St. Louis Missouri USAAbstract 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.https://doi.org/10.1002/acn3.51941 |
| spellingShingle | 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 Caregiver descriptions of dystonia in cerebral palsy Annals of Clinical and Translational Neurology |
| title | Caregiver descriptions of dystonia in cerebral palsy |
| title_full | Caregiver descriptions of dystonia in cerebral palsy |
| title_fullStr | Caregiver descriptions of dystonia in cerebral palsy |
| title_full_unstemmed | Caregiver descriptions of dystonia in cerebral palsy |
| title_short | Caregiver descriptions of dystonia in cerebral palsy |
| title_sort | caregiver descriptions of dystonia in cerebral palsy |
| url | https://doi.org/10.1002/acn3.51941 |
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