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| Name | Class |
|---|---|
| Center for Rehabilitation of Brain Injury (Center for Hjerneskade) | UNKNOWN |
| Aarhus University Hospital | OTHER |
| University of Copenhagen | OTHER |
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Background: Cerebral palsy (CP) is characterized by motor impairment but commonly involves more widespread difficulties, including cognitive impairment. However, cognitive impairment in CP - especially of a more subtle nature - is often overlooked, despite being associated with substantial academic, social, and emotional problems. In Denmark, the CP follow-up program (CPOP) includes systematic assessment of physical functions, but cognitive assessment is omitted. Prior to starting school, professionals evaluate the school readiness of children with CP, sometimes including a test of general cognitive functioning. Thereafter, cognitive assessments are rarely offered in mainstream schools (Folkeskolen) and can only be accessed if the difficulties are clearly disabling. Recent studies indicate that cognitive assessment needs to be implemented in the follow-up program for school children. For example, one study found that only 42% of students with CP complete mainstream school in Denmark, and international neurocognitive studies have found global cognitive difficulties (lower IQ) and specific impairments in visuo-spatial functions, executive functions, and processing speed in youth with CP. User organizations in the Nordic countries have called for action in recent years, leading to the development of a proposed cognitive follow-up program for children and adolescents with CP, the CPCog, which has yet to be evaluated and implemented in Denmark. Taken together, prior studies and patient experiences emphasize the need for systematic assessment of cognitive functioning in children and adolescents with CP to document the type and extent of cognitive difficulties, secure qualified intervention, and prevent the development of social and emotional problems.
Objective: The main purpose of this study is to characterize cognitive functioning in children and adolescents with CP in Danish mainstream schools. By documenting the extent and type of cognitive impairment associated with CP, we aim to inform future clinical practice and make recommendations for systematic assessment and intervention.
Method: The study is a cross-sectional study with 100 children and adolescents with CP (11-15 years). Each participant will undergo cognitive assessment with the core battery proposed in the Nordic CPCog protocol, including assessment of general cognitive functioning (intelligence), executive functions, and visuo-motor skills. Additionally, participants will undergo supplemental tests of memory, attention, fatigue, and symptoms of psychopathology. Cognitive assessments will take place at two sites: the Neurocenter for Children and Adolescents, Center for Rehabilitation of Brain Injury, and the Center for Clinical Neuropsychology, Children and Adolescents, Rigshospitalet, Copenhagen, Denmark. The project is carried out in collaboration between the neuropediatric and neuropsychological teams associated with the two sites of assessment, as well as the Center for Cerebral Palsy, Rigshospitalet, Aarhus University Hospital, CPOP, and an external advisory board including leading international CP experts.
Results: The CPCog-Youth-DK study will help characterize the cognitive difficulties associated with CP in children and adolescents in mainstream school, which will guide clinical practice and the development and implementation of systematic cognitive assessment and intervention programs. The cognitive assessment protocol will also be evaluated from the perspectives of children and adolescents with CP, parents, and professionals (e.g., assessors and school personnel) to evaluate whether the protocol is tolerable and helpful. Study results will be published in international, peer-reviewed journals, and will be made publicly available via other relevant platforms (such as the websites for the CP clinic at Rigshospitalet, Center for Rehabilitation of Brain Injury, and the Elsass Foundation). Several of the study investigators are directly involved in the current CP follow-up program in Denmark which will aid the process of turning our research into practice.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Case group | Children and adolescents with cerebral palsy who are 11-15 years old, diagnosed with cerebral palsy (any type), and who attend a Danish mainstream school at time of enrollment |
| |
| Control group | Children and adolescents without cerebral palsy in the same age range as case-participants (11-15 years old) and attend Danish mainstream schools. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Cognitive assessment | Other | All participants will receive cognitive assessment with a core battery (CPCog) and a supplemental battery. The core battery includes standardized tests of general cognitive functioning (intelligence) and visual-spatial abilities, as well as a questionnaire on executive functioning in daily life. The supplemental battery assesses attention, executive functioning, memory, fatigue, and symptoms of mental health issues (including symptoms of anxiety, depression, and attention deficit hyperactivity disorder/ADHD). |
| Measure | Description | Time Frame |
|---|---|---|
| Global cognitive functioning (IQ) | General cognitive functioning as measured by the GAI from the Wechsler Intelligence Scale for Children, Fifth Edition (WISC-V) | At first day of assessment |
| Visuo-spatial functioning | Score from the Beery-Buktenica Developmental Test of Visual Motor Integration (Beery VMI) | At first day of assessment |
| Executive functioning | Cognitive regulation index score from the Behavior Rating Inventory of Executive Function - second edition (BRIEF-2), parent version. | At first day of assessment |
| Measure | Description | Time Frame |
|---|---|---|
| Task switching ability | Number of correct words named on the D-KEFS verbal fluency task, and completion time in seconds on the D-KEFS Trail Making task | At second day of assessment |
| Attention | Response sensitivity score (d') on the Test of Variables of Attention (T.O.V.A.) |
| Measure | Description | Time Frame |
|---|---|---|
| ADHD symptomatology | Total scores of inattention, hyperactivity, and behavior scales of the ADHD-rs questionnaire | At second day of assessment |
| Symptoms of autism spectrum disorder | Index score from the Behavior Assessment System for Children, third edition (BASC-3), parent and child version |
CASE GROUP:
Inclusion Criteria:
Exclusion Criteria:
- Does not speak or understand Danish at the level necessary to participate (as evaluated by the research team)
CONTROL GROUP:
Inclusion Criteria:
Exclusion Criteria:
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Children and adolescents with cerebral palsy and healthy control participants (age range: 11-15 years old).
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Camilla Funch Uhre, MSc, PhD | Contact | +4530537166 | camilla.funch.uhre.01@regionh.dk | |
| Christina Høi-Hansen, MD, PhD | Contact | +4535455095 | christina.hoei-hansen@regionh.dk |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Rigshospitalet | Recruiting | Copenhagen | 2100 | Denmark |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 39725891 | Derived | Uhre CF, Caspersen ID, Lose C, Rackauskaite G, Robotham R, Hoei-Hansen CE. Cognitive functioning in children and adolescents with cerebral palsy: protocol for the Danish CPCog-Youth study. BMC Pediatr. 2024 Dec 27;24(1):836. doi: 10.1186/s12887-024-05305-w. |
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| ID | Term |
|---|---|
| D002547 | Cerebral Palsy |
| ID | Term |
|---|---|
| D001925 | Brain Damage, Chronic |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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| ID | Term |
|---|---|
| D000073216 | Mental Status and Dementia Tests |
| ID | Term |
|---|---|
| D009483 | Neuropsychological Tests |
| D011581 | Psychological Tests |
| D004191 | Behavioral Disciplines and Activities |
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| At second day of assessment |
| Verbal memory | Scale scores of selected verbal subtests (Word Selective Reminding; Object Recall) from 6the Test of Memory and Learning, Second edition (TOMAL-2) | At second day of assessment |
| Visual memory | Scale scores of selected nonverbal subtests (Abstract Visual Memory; Visual Sequential Memory) from the Test of Memory and Learning, Second Edition (TOMAL-2) | At second day of assessment |
| Working memory | Working Memory Index score from the WISC-V | At second day of assessment |
| At second day of assessment |
| Symptoms of emotional behavioral disturbance | Index score from the Behavior Assessment System for Children, third edition (BASC-3), parent and child version | At second day of assessment |
| Fatigue | PedsQL MFS score | At second day of assessment |
| Adaptive functioning | General Adaptive Composite (GAC) score from the Adaptive Behavior Assessment System, Third Edition (ABAS-3) | At second day of assessment |
| Center for Rehabilitation of Brain Injury (Center for Hjerneskade) | Recruiting | Copenhagen | 2300 | Denmark |
|