Effects of Associated Impairments on Activity and Participation in Children With Cerebral Palsy
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Cerebral Palsy. Basic parameters: 6 years — 12 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Turkey (Türkiye)
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Investigation of the Effects of Associated Impairments in School-Age Children With Cerebral Palsy on the Child's Activity and Participation Level and on Their Families
Overview
This study will investigate the effects of associated impairments on the activity levels and social participation of school-aged children with Cerebral Palsy (aged 6-12) and their impact on their families' quality of life and caregiving burden.
Detailed description
Cerebral Palsy (CP) defines a group of permanent disorders in movement and posture development, which are expressed as non-progressive disorders that occur in the developing baby brain during life in the womb or the first 3 years after birth, causing restrictions in activity and participation.
Hearing, speech, vision, cognitive, eating and swallowing problems and epilepsy primarily accompany the motor and postural control problems seen in CP. It is reported that cognitive disabilities or learning difficulties are seen in 50-75%, speech problems in 25%, hearing problems in 25%, seizures in 25-35% and visual disorders in 40-50% of individuals with CP. These primary problems, which accompany from the beginning, vary according to the clinical type and functional effect of CP and affect the severity of the existing CP clinical picture.
The International Classification of Functioning, Disability and Health (ICF) is a framework that guides the comprehensive assessment and treatment of children with CP by considering the wide range of health-related problems they face. The ICF includes four interrelated components: body structure and functions, activity and participation, and personal and environmental factors. According to the ICF, impairments are defined as significant deviations or losses in body structure and functions, while activity limitations, difficulties in activities, and participation restrictions are defined as problems in the form or scope of participation in life.
With these impairments added to the clinical picture, children with CP face significant limitations in their activity and participation levels. Therefore, it is important to define the relationship between comorbid impairments and activity and participation limitations in order to create holistic treatment goals and interventions that improve the activity and participation levels of children with CP.
According to the World Health Organization, quality of life, especially the health-related quality of life of parents of children with special needs, is a complex and comprehensive concept related to the physical health status, psychological status, independence level, social relationships, personal beliefs and environmental characteristics of the parents.
The care of children with CP is long-term and difficult. It has been reported that frequent hospital visits from the moment of diagnosis, the need for multidisciplinary therapy and the difficulty of the care process can lead to the parents not being able to spare time for themselves and their surroundings, economic difficulties and deterioration in their quality of life.
When the literature is examined, no study has been found that examines the multidimensional problems accompanying CP, especially with a sample from our country.
Primary outcome measures
- PEDI-CAT (Pediatric Evaluation of Disability Inventory Computer Adaptive Test) [Time frame: Single assessment conducted during the initial study visit]
- LIFE-H 3.0 (The Assessment of life habits) [Time frame: Single assessment conducted during the initial study visit]
Secondary outcome measures (2)
- Nottingham Health Profile [Time frame: Single assessment conducted during the initial study visit]
- Impact on Family Scale (IPFAM) [Time frame: Single assessment conducted during the initial study visit]
Eligibility criteria
For children:
Inclusion criteria
- Having a diagnosis of cerebral palsy
- Being between the ages of 6-12
- Having family approval for the study Exclusion criteria
- Being under the age of 6 and over the age of 12
- Parents and children who do not volunteer to participate in the study
- Not knowing Turkish
For families:
Inclusion criteria
- Having a child between the ages of 6-12 diagnosed with cerebral palsy
- Being willing to participate in the study Exclusion criteria
- Not being willing to participate in the study
- Not knowing Turkish
- Not being able to read and write
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Case-only
Study locations
Turkey (Türkiye) · 1 center
- Hacettepe University Faculty of Physical Therapy and Rehabilitation Cerebral Palsy and Ped — Ankara
Identifiers
NCT: NCT06944171 · HU-FTR-EE-01