Proposed updated description of cerebral palsy
Bernard Dan1,2,3, Peter Rosenbaum1,4, Lucinda Carr1,5
1Mac Keith Press, London, UK.
Insights
This study proposes an updated description of cerebral palsy (CP), integrating global stakeholder perspectives. The new definition aims to advance clinical practice, research, and policy for better inclusion.
Area of Science:
- Neurology
- Developmental Pediatrics
- Public Health
Background:
- Cerebral palsy (CP) is a motor disorder from early developmental brain injury.
- Research has advanced understanding of CP's genetic, inflammatory, and neurophysiological bases.
- Global research and lived experiences are reshaping CP perception and service needs.
Purpose of the Study:
- To propose an updated, collaborative description of cerebral palsy (CP).
- To integrate diverse stakeholder perspectives for a refined understanding of CP.
- To establish a preliminary framework for CP clinical practice, research, and policy.
Main Methods:
- Multidisciplinary, collaborative approach involving individuals with CP, families, clinicians, and researchers.
- Comprehensive stakeholder analysis and mapping for broad representation.
- Data collection via surveys, interviews, focus groups, and workshops with global input.
Main Results:
- A preliminary, updated description of cerebral palsy (CP) integrating stakeholder insights.
- Emphasis on a shared understanding of CP to guide future endeavors.
- Foundation laid for continued refinement through collaborative dialogue.
Conclusions:
- The proposed description serves as a preliminary framework for CP.
- Collaboration is crucial for advancing CP care and inclusion.
- Continued refinement of the CP definition is essential.
Abstract:
'Cerebral palsy' ('CP') is a widely used descriptive label for a spectrum of motor impairments caused by non-progressive brain injury or malformation occurring during early development. Advances in research have significantly refined our understanding of CP, including insights into its genetic, inflammatory, and neurophysiological underpinnings. Research across global contexts, including low- and middle-income countries, has expanded knowledge of clinical features. Shifting societal perceptions, driven by individuals with lived experience, have further influenced how CP is understood, challenging ableist attitudes and promoting inclusive frameworks. Additionally, increased recognition of the needs and experiences of adults with CP has highlighted the importance of further developing appropriate services. The primary aim of this paper is to propose an updated description of CP, developed through a collaborative, multidisciplinary process, as a preliminary formulation that integrates stakeholder perspectives at this stage of the process. By framing it as a foundation for further discussion and refinement, the manuscript emphasizes the output itself rather than the process of its development. A comprehensive stakeholder analysis and mapping approach ensured broad representation, including individuals with CP, families, clinicians, researchers, advocacy groups, and others. Data were collected through surveys, interviews, focus groups, and workshops, facilitating a global dialogue that combined the expertise of those with lived experience with that of clinicians. The description is intended to serve as a preliminary framework to guide clinical practice, research, and policy, emphasizing a shared understanding of CP. The proposed updated description thus lays the foundation for continued refinement, emphasizing the importance of collaboration in advancing the care and inclusion of individuals with CP.
