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Clinical Trial Summary

Dystonia is the most common movement disorder in the pediatric population after spasticity. It can affect normal motor development and cause significant motor retardation. The presence of dystonia may affect motor function, pain, and ease of care in CP. Additionally, it can cause serious difficulties in daily living activities and social participation and long-term joint deformity. The increase in the severity of dystonia in CP children with secondary dystonia may affect the quality of life, activity and participation of the children, as well as the caregiver. The importance of caregivers is an undeniable fact, especially in these patient groups. This study aims to investigate the burden of dystonia severity on the participation in daily living activities and caregivers of children with CP with secondary dystonia.


Clinical Trial Description

It's an observational study. Purpose of the study: Investigating the burden of dystonia severity on the participation in daily living activities and caregivers of children with CP with secondary dystonia. - Does dystonia severity affect participation in daily life activities in CP children with secondary dystonia? - Does the severity of dystonia in children with CP with secondary dystonia affect the burden on the caregiver? - Are the participation in daily living activities and caregiver burden of children with CP with secondary dystonia related to each other? Total of 20 CP cases with secondary dystonia who applied to Acıbadem University Department of Pediatric Neurosurgery will be included in the study. Dystonia severity of these cases will be evaluated with the Barry-Albright Dystonia Scale (BADS). Children's participation in daily living activities will be evaluated with The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), and the burden on the caregiver will be evaluated with the Care and Comfort Hypertonicity Questionnaire (CCHQ). ;


Study Design


Related Conditions & MeSH terms


NCT number NCT06307561
Study type Observational
Source Acibadem Atunizade Hospital
Contact
Status Completed
Phase
Start date January 1, 2021
Completion date January 1, 2024

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