GMFM-66-IS scores were supported by strong construct validity and moderate responsiveness evidence for use with infants and toddlers at high risk for CP.
This systematic review examines the issue of bone health in adults with cerebral palsy. Skeletal fragility is highest in adults with poor functional state, nutritional deficits and anticonvulsant use.
This study outlines efforts to establish expert consensus on key therapist-supported intervention principles for interventions spanning the NICU-to-home transition. A modified Delphi technique was utilized to seek opinions from independent and relevant interdisciplinary experts on the use of interventions during the transition from NICU to home. Results showed strong consensus on four key intervention principles: building caregiver-child relationships, optimizing infant development, providing education and knowledge sharing, and enriched environments.
This original article is commented by Badawi and Crowle on pages 280–281 of this issue.
Pathogenic variants in MAGEL2 cause Schaaf–Yang syndrome (SYS). MAGEL2 has diverse physiological functions, particularly in the human hypothalamus. Loss of function likely explains several SYS phenotypes. In addition it has become evident that neomorphic effects of truncated MAGEL2 proteins likely contribute to the severity of this complex neurodevelopmental disorder. This review summarizes scientific knowledge about MAGEL2 physiology, pathophysiology, and SYS.
Muscle satellite cells (MuSCs) have impaired differentiation in CP and form nuclear clusters on higher, contracture-like stiffnesses. Fibro-adipogenic progenitors (FAPs) from CP muscle activate more readily into myofibroblasts.
Patients with cerebral palsy (CP) undergoing ankle fracture open reduction and internal fixation (ORIF) were at increased odds of 90-day adverse events.
Many of the 90-day adverse events related to previously described comorbidities associated with CP.
Patients with CP undergoing ankle fracture ORIF experienced increased rates of prolonged length of stay.
Five studies used formal risk assessment approaches to evaluate postoperative outcomes in children with complex chronic conditions.
Conceptual and methodological differences between comorbidity indexes and risk prediction models are explicated.
Further development of prediction science is needed for determining postoperative outcomes.
Enhanced preoperative comorbidity assessment will identify children at risk of poor outcomes.
This scoping review identified all studies that used tools to measure the impact of comorbidities on surgical outcomes in children with complex chronic conditions. Five studies utilizing six measures were included in the review. Despite the majority of studies meeting criteria for being of high quality, they are in the early stages of their development and lack external validation when applied to children with complex chronic conditions.
Negative community attitudes about disability affect confidence and self-perception, and hinder participation, in young adults with cerebral palsy (CP).
Close friends can act as a buffer for young adults with CP, fostering their participation and bringing joy.
A government-funded disability support scheme has improved access to services.
However, high levels of advocacy are required to obtain appropriate support.
Online learning enhanced the participation and engagement of young adults with CP enrolled at university during the COVID-19 pandemic.
A series of qualitative participation-focussed interviews with young adults with CP highlighted the complexity they faced during the transition into adulthood. In this study, young adulthood was described as a time of exploration, change, and growth. The overarching theme of ‘branching out into adulthood’ captured the broad and varied hopes, plans, and experiences of participation for these young people.
This original article is commented by Henry on pages 1273–1274 of this issue.
The common data elements (CDEs) for arthrogryposis multiplex congenita include 321 data elements from perinatal period to adulthood.
A universal governance structure, partner-specific operating protocols, and sustainability plans will facilitate multi-institutional implementation of CDEs.
Inconsistent electronic infrastructure, different terminologies for databases, and feasibility issues are the main barriers for international implementation of CDEs.
In this study, we describe consensus-based common data elements to advance international standardized data collection in arthrogryposis multiple congenita.
Spanish and French translation of this Original Article is available in the online issue.
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