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In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions.
The most common cause of morbidity and mortality in children with severe cerebral palsy (CP) is respiratory disease. BREATHE-CP (Better REspiratory and Airway Treatment and HEalth in Cerebral Palsy) is a multidisciplinary research team who have conducted research on the risk factors associated with CP respiratory disease, a systematic review on management and a Delphi study on the development of a consensus for the prevention and management of respiratory disease in CP.
Intensive rehabilitation aims to improve and maintain functioning in young people who experience disability due to illness or injury. Day rehabilitation may have advantages for families and healthcare systems over inpatient models of rehabilitation.
To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0–24 years) with a neurodevelopmental disability.
Achondroplasia is the most common form of skeletal dysplasia. In addition to altered growth, children and young people with achondroplasia may experience medical complications, develop and function differently to others and require psychosocial support. International, European and American consensus guidelines have been developed for the management of achondroplasia. The Australian focused guidelines presented here are designed to complement those existing guidelines.
We investigate the construct validity, test re-test reliability, and responsiveness of the Wrist Position Sense Test (WPST) for children with hemiplegic cerebral palsy (CP).
Citation: Marpole R, Langdon K, Wilson A. Gastrostomy feeding in children with severe cerebral palsy in Western Australia. Acta Paediatr Int J
Accelerate will develop and pilot, a multi-directorate teaching and training network for early detection of cerebral palsy (CP), encompassing key clinical partners across CAHS and WACHS.
Cerebral palsy is a diagnosis based on clinical signs and not aetiology or pathology, with only ~50% of children receiving a clinical diagnosis in the first year of life; limiting the opportunity for intervention where maximal neuronal plasticity may occur.
To describe writhing General Movements Assessment (GMA) classification and General Movement Optimality Score-Revised (GMOS-R) profiles in the general population; to explore relationships between GMOS-R scores and GMA classification, age of assessment and infant socio-demographic factors; and to establish the inter-rater reproducibility of writhing age GMA classification and GMOS-R.