Clinical trial NCT06307561: The Effect of Dystonia Severity on Participation in Daily Living Activities and Caregivers in Children of Cerebral Palsy With Secondary Dystonia
Official title: The Effect of Dystonia Severity on Participation in Daily Living Activities and Caregivers in Children of Cerebral Palsy With Secondary Dystonia
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Secondary Dystonia
Cerebral Palsy, Mixed
Keywords: Dystonia
Participation
Caregiver
Burden
Lead sponsor: Acıbadem Atunizade Hospital
Sponsor class: OTHER
First posted: 2024-03-13
Enrollment: 20
Sex: ALL
Minimum age (years): 3
Maximum age (years): 15
Standard ages: CHILD
Accepts healthy volunteers: no
Observational model: CASE_ONLY
Time perspective: CROSS_SECTIONAL
Sampling method: PROBABILITY_SAMPLE
Study population: Total of 20 cases CP with secondary dystonia, aged between 3-15 years were included in the study.

Brief 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.

Detailed 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).

Eligibility criteria: Inclusion Criteria:

* Total of 20 cases CP with secondary dystonia, aged between 3-15 years were included in the study.
* Obtaining voluntary consent from the family.

Exclusion Criteria:

* Having a surgical operation procedure on the musculoskeletal system.
* Receiving BoNT-A in the last 6 months.

Primary outcomes:
measure: The Barry-Albright Dystonia Scale (BADS)
timeFrame: baseline
measure: The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)
timeFrame: baseline
measure: The Care and Comfort Hypertonicity Questionnaire (CCHQ)
timeFrame: baseline
Secondary outcomes:
Other outcomes:
Locations:
city: Istanbul
country: Turkey
facility: Acıbadem Altunizade Hospital
state: Altunizade
Study officials:
References: