Cerebral palsy pain instruments: Recommended tools for clinical research studies by the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements project.

AIM: This study describes the process of updating the cerebral palsy (CP) common data elements (CDEs), specifically identifying tools that capture the impact of chronic pain on children's functioning. METHOD: Through a partnership between the American Academy for Cerebral Palsy and Developmental Medicine and the National Institute of Neurological Disorders and Stroke (NINDS), the CP CDEs were developed as data standards for clinical research in neuroscience. Chronic pain was underrepresented in the NINDS CP CDEs version 1.0. A multi-step methodology was applied by an interdisciplinary professional team. Following an adapted CP chronic pain tools' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022. RESULTS: Fifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health. INTERPRETATION: This paper describes the first condition-specific pain CDEs for a pediatric population. The proposed set of chronic pain tools complement and enhance the applicability of the existing pediatric CP CDEs. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing it in everyday activities.

Zika Virus After Emergency Response: Can the ICF Guide Rehabilitation of Children With Microcephaly?

The outbreak of Zika in Brazil almost 3 years ago had harmful medical, financial, and social consequences for children and their families. It also significantly increased the statistics of Brazilian children with disabilities being followed up in rehabilitation centers. Actions promoting the use of the International Classification of Functioning, Disability and Health (ICF) framework are encouraged in view of the complex health needs identified in this population, which cover all areas of functioning, and gain special relevance when it comes to a vulnerable context. This perspective article discusses the challenges related to the implementation of the ICF in rehabilitation services for children with congenital syndrome.

International Classification of Functioning, Disability and Health Core Sets for cerebral palsy, autism spectrum disorder, and attention-deficit-hyperactivity disorder.

AIM: Capturing functional information is crucial in childhood disability. The International Classification of Functioning, Disability and Health (ICF) Core Sets promote assessments of functional abilities and disabilities in clinical practice regarding circumscribed diagnoses. However, the specificity of ICF Core Sets for childhood-onset disabilities has been doubted. This study aimed to identify content commonalities and differences among the ICF Core Sets for cerebral palsy (CP), and the newly developed Core Sets for autism spectrum disorder (ASD) and attention-deficit-hyperactivity disorder (ADHD). METHOD: The categories within each Core Set were aggregated at the ICF component and chapter levels. Content comparison was conducted using descriptive analyses. RESULTS: The activities and participation component of the ICF was the most covered across all Core Sets. Main differences included representation of ICF components and coverage of ICF chapters within each component. CP included all ICF components, while ADHD and ASD predominantly focused on activities and participation. Environmental factors were highly represented in the ADHD Core Sets (40.5%) compared to the ASD (28%) and CP (27%) Core Sets. INTERPRETATION: International Classification of Functioning, Disability and Health Core Sets for CP, ASD, and ADHD capture both common but also unique functional information, showing the importance of creating condition-specific, ICF-based tools to build functional profiles of individuals with childhood-onset disabilities. WHAT THIS PAPER ADDS: The International Classification of Functioning, Disability and Health (ICF) Core Sets for cerebral palsy (CP), autism spectrum disorder (ASD), and attention-deficit-hyperactivity disorder (ADHD) include unique functional information. The ICF-based tools for CP, ASD, and ADHD differ in terms of representation and coverage of ICF components and ICF chapters. Representation of environmental factors uniquely influences functioning and disability across ICF Core Sets for CP, ASD and ADHD.

A common data language for clinical research studies: the National Institute of Neurological Disorders and Stroke and American Academy for Cerebral Palsy and Developmental Medicine Cerebral Palsy Common Data Elements Version 1.0 recommendations.

To increase the efficiency and effectiveness of clinical research studies, cerebral palsy (CP) specific Common Data Elements (CDEs) were developed through a partnership between the National Institute of Neurological Disorders and Stroke (NINDS) and the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM). International experts reviewed existing NINDS CDEs and tools used in studies of children and young people with CP. CDEs were compiled, subjected to internal review, and posted online for external public comment in September 2016. Guided by the International Classification of Functioning, Disability and Health framework, CDEs were categorized into six domains: (1) participant characteristics; (2) health, growth, and genetics; (3) neuroimaging; (4) neuromotor skills and functional assessments; (5) neurocognitive, social, and emotional assessments; and (6) engagement and quality of life. Version 1.0 of the NINDS/AACPDM CDEs for CP is publicly available on the NINDS CDE and AACPDM websites. Global use of CDEs for CP will standardize data collection, improve data quality, and facilitate comparisons across studies. Ongoing collaboration with international colleagues, industry, and people with CP and their families will provide meaningful feedback and updates as additional evidence is obtained. These CDEs are recommended for NINDS-funded research for CP. WHAT THIS PAPER ADDS: This is the first comprehensive Common Data Elements (CDEs) for children and young people with CP for clinical research. The CDEs for children and young people with CP include common definitions, the standardization of case report forms, and measures. The CDE guides the standardization for data collection and outcome evaluation in all types of studies with children and young people with CP. The CDE ultimately improves data quality and data sharing.

International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: a consensus meeting.

AIM: The objective of this article is to report on the Core Sets developed for children and youth aged 0 to 18 years, with cerebral palsy (CP) based on the pediatric International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO). METHOD: A formal decision-making and consensus process integrating evidence gathered from preparatory studies was followed. Preparatory studies included: a systematic literature review; an international expert survey; a qualitative study of children and youth with CP and their caregivers; and a clinical study. Relevant ICF categories were identified in a formal consensus process by international experts from different backgrounds. Twenty-six international experts chosen by WHO region with expertise in CP attended the consensus meeting. RESULTS: Overall, five ICF Core Sets were developed: a Comprehensive Core Set (135 ICF categories); a Common Brief (25 ICF categories); and three age-specific Core Sets: under 6 years (31 ICF categories), from 6 to <14 years (35 ICF categories) and from 14 to 18 years (37 ICF categories). INTERPRETATION: These ICF Core Sets for children and youth with CP are the first ICF-based tools developed for this population. The ICF Core Sets for children and youth with CP can be applied in clinical practice, research, teaching and administration. The application of the ICF Core Sets to this population will standardize the functional assessments of CP worldwide.