Hip surveillance in cerebral palsy: Review of clinical practice in a tertiary children's hospital using electronic health record linkage.

Background: Children with cerebral palsy (CP) can develop neuromuscular hip dysplasia (NHD) and radiographic surveillance is recommended, guided by gross motor function classification system (GMFCS) level. This study evaluated the clinical practice of hip surveillance for NHD in a children's hospital and risk factors for abnormal first and subsequent X-rays.

Method: Health data were extracted for 159 participants with CP, 98 male, 52 GMFCS level IV or V (birth years 2008-2018) and linked to electronic radiology datasets.

Respiratory Health Inequities among Children and Young Adults with Cerebral Palsy in Aotearoa New Zealand: A Data Linkage Study.

(1) Background: Respiratory disease is a leading cause of morbidity, mortality, and poor quality of life in children with cerebral palsy (CP). This study describes the prevalence of CP-related respiratory disease and the non-modifiable risk factors for respiratory-related hospital admissions in the Aotearoa New Zealand population. (2) Methods: New Zealand Cerebral Palsy Register (NZCPR) participant data and de-identified data from the National Minimum Dataset and Pharmaceutical Dispensing Collections were linked to identify all respiratory-related hospital admissions and respiratory illness-related antibiotic exposure over 5 years in individuals with CP (0−26 years).

Utility of data linkage for orthopaedic service planning in the paediatric population with cerebral palsy at Starship Children's Hospital.

Aims: To determine the accuracy of orthopaedic surgical procedure coding (ICD-10-AM/ACHI/ACS) for children with cerebral palsy (CP) at Starship Children's Hospital, use data linkage with the New Zealand Cerebral Palsy Register (NZCPR) to obtain demographic and clinical information for children with CP requiring orthopaedic surgical services in the Auckland District Health Board catchment area, and to determine if trends in the clinical and demographic data are useful for future service planning for children with CP.

Methods: Surgical admission data for children with CP aged 0-18 years at the time of their first procedure were extracted from Auckland District Health Board records for 2013-2018, and information on demographics and Gross Motor Function Classification System level were obtained from the NZCPR. The ICD-10-AM/ACHI/ACS codes for surgery/intervention were matched with the operation notes in the electronic health records using NHI numbers and assessed for accuracy.

Prioritizing indigenous health equity in health registers: an environmental scan of strategies for equitable ascertainment and quality data.

Background: Cerebral palsy (CP) registers serve as instrumental tools to support development of care pathways, preventative strategies, and health gains. Such health gains, however, are not always universal, with Indigenous health inequities common. To support Indigenous health, health registers need complete, consistent, and high-quality data.

Neonatal Neuroimaging in Neonatal Intensive Care Graduates Who Subsequently Develop Cerebral Palsy.

Cerebral palsy is a common cause of physical disability. The New Zealand Cerebral Palsy Register (NZCPR) was established in 2015 and reports national data. Internationally, an early CP diagnosis has been a focus, with imaging and clinical tools used to enable early accurate detection.

Indigenous health equity in health register ascertainment and data quality: a narrative review.

Background: Health registers play an important role in monitoring distribution of disease and quality of care; however, benefit is limited if ascertainment (i.e., the process of finding and recruiting people on to a register) and data quality (i.

"It Should Have Been Given Sooner, and We Should Not Have to Fight for It": A Mixed-Methods Study of the Experience of Diagnosis and Early Management of Cerebral Palsy.

Listening to the family experience is integral to identifying areas of strength and for improvement in health service delivery around diagnosis and early management of cerebral palsy (CP). Families of children with a diagnosis of CP were invited to complete a purpose-developed electronic survey that included items around the timing of diagnosis, their experiences and satisfaction. It also allowed families to expand on their experiences through free text.