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). (3) Results: Risk factors for respiratory-related hospital admissions included being classified Gross Motor Function Classification System (GMFCS) IV or V compared to GMFCS I [OR = 4.37 (2.90−6.58), p < 0.0001; OR = 11.8 (7.69−18.10), p < 0.0001, respectively,]; having ≥2 antibiotics dispensed per year [OR = 4.42 (3.01−6.48), p < 0.0001]; and being of Maori ethnicity [OR = 1.47 (1.13−1.93), p < 0.0047]. Maori experienced health inequities compared to non-Maori, with greater functional disability, and also experienced greater antibiotic dispensing than the general population. (4) Conclusion: Maori children and young adults have a higher risk of respiratory-related illness. Priority should be given to the screening for potentially modifiable risk factors for all children with CP from diagnosis onwards in a way that ensures Maori health equity.

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. RESULTS: During the study period, 261 paediatric patients with CP underwent orthopaedic procedures, which could be grouped broadly into five categories (spine, upper limb, lower limb, Botulinum-A toxin injection only, and other) with a coding accuracy of 95%. Clinical and demographic data could be obtained from the NZCPR for 232 (88.9%) of the 261 patients. CONCLUSIONS: Using orthopaedic surgical procedure codes, we could identify broad categories of procedures received by children with CP and the demographic and clinical characteristics of these children, which will assist with service planning and identify trends in care delivery.

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. The aim of this study was to identify perceived barriers to the ascertainment of Indigenous peoples on health registers and to collate strategies supporting comprehensive ascertainment and achievement of high-quality Indigenous data. METHODS: Environmental scanning methods were utilized within a Kaupapa Maori theoretical framework, which aims to produce research that is transformational and supportive of Indigenous health gain. Knowledge and insights were obtained from CP registers in countries with Indigenous populations and complemented by information from health registers in Aotearoa New Zealand (NZ). Data collection methods included an online survey and scan of organizational websites. Data extraction focused on general information about the register, barriers to ascertainment, and strategies to support ascertainment and high data quality. RESULTS: 52 registers were identified, 20 completed the survey and 19 included in the study (CP registers, n = 10, NZ health registers, n = 9). Web scan data were included for the other 32 registers (CP registers, n = 21, NZ health registers, n = 11). Indigenous health equity was identified in the visions and aims of only two health registers. Ethnicity data collection was identified in nearly three quarters of survey respondents and a limited number of organizational websites. Over half of survey respondents described system, health provider/service, or workforce barriers to ascertainment. Strategies were categorized into collaboration, health provider/service, workforce, and systems-levels. Indigenous-specific strategies were limited and focused on personal behaviour and access to registration. CONCLUSIONS: CP and other health registers can have a significant role in identifying and addressing Indigenous health inequities. However, this is not currently an overt priority for many registers in this study and few registers describe ascertainment and data quality strategies specific to Indigenous peoples. Significant opportunity exists for health registers to be accountable and to implement approaches to support Indigenous health equity, address structural determinants of inequities, and achieve health gain for all.

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. Accordingly, guidelines are being developed for New Zealand, including a specific pathway for high-risk neonatal intensive care (NICU) graduates, reflecting the high rate of CP in this group. To inform this work, we reviewed imaging data from a retrospective NICU cohort identified from the NZCPR. In these 140 individuals with CP and a confirmed NICU admission during 2000-2019 inclusive, imaging frequency, modality, and rate of abnormality was determined. Overall, 114 (81.4%) had imaging performed in the NICU, but the frequency and modality used varied by gestational subgroup. For infants born at less than 32 weeks gestation, 53/55 had routine imaging with ultrasound, and IVH was graded as none or mild (grade 1-2) in 35 or severe (grade 3-4) in 18 infants. For the 34 infants born between 32-36 weeks gestation, only 13/19 imaged in the NICU were reported as abnormal. For 51 term-born infants, 41/42 imaged in the NICU with MRI had abnormal results.

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.e., the accuracy, completeness, reliability, relevance, and timeliness of data) are poor. Indigenous peoples experience significant health inequities globally, yet health data for, and about, Indigenous peoples is often of poor quality. This narrative review aimed to (i) identify perceived barriers for the ascertainment of Indigenous peoples on health registers, and (ii) collate strategies identified and used by health registers to support comprehensive ascertainment and high-quality data for Indigenous peoples. METHODS: A Kaupapa Maori theoretical framework was utilized to guide this work. Four electronic databases were systematically searched for original articles and screened for eligibility. Studies involving health registers with Indigenous population(s) identified were included if either ascertainment or data quality strategies were described. Data extraction focused on the reporting of research involving Indigenous peoples using the CONSIDER checklist domains, ascertainment, and data quality. RESULTS: Seventeen articles were included spanning publication between 1992 and 2020. Aspects of four of eight CONSIDER domains were identified to be included in the reporting of studies. Barriers to ascertainment were themed as relating to 'ethnicity data collection and quality', 'systems and structures', 'health services/health professionals', and 'perceptions of individual and community-level barriers'. Strategies to support ascertainment were categorized as 'collaboration', 'finding people', and 'recruitment processes'. Categorized strategies to support data quality were 'collaboration', 'ethnicity data collection and quality', 'systems-level strategies', and 'health service/health professional-level strategies'. CONCLUSIONS: Poor-quality data for Indigenous peoples in health registers prevents the achievement of health equity and exemplifies inaction in the face of need. When viewed through a critical structural determinants lens, there are visible gaps in the breadth of strategies, particularly relating to the inclusion of Indigenous peoples in health register and research governance, and actions to identify and address institutional racism. Indigenous led research, meaningful collaboration, and a sharing of knowledge and experiences between health registers is recommended to enable research and health registers that support Indigenous self-determination and health equity.

"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. Of the 57 families responding, 49% of children functioned at Gross Motor Function Classification System (GMFCS) levels I or II, 8% at GMFCS level III and 23% at GMFCS levels IV or V. 51% of participants were satisfied or very satisfied with the diagnosis experience, 18% were neutral about the experience and 31% were dissatisfied or very dissatisfied. Though the findings of this study may be subject to selection bias, perceived delays in the receipt of diagnosis of CP appeared common with 60% of participants indicating concerns about their child by <6 months of age but only 21% provided with a diagnosis of CP <6 months of age. Approximately 18% of families experienced a delay of more than 12 months. Thirty-four (61%) participants noted a delay between referrals to a service and receipt of service management/therapy. Common themes impacting on families' experience in the diagnosis and health service delivery journey related to provision of information, and the style of communication, with both direct and ongoing communication styles common for greater family satisfaction. Overall, families desired the diagnosis experience to be informative and timely, with early follow up support and assistance with health sector navigation.

Clinical practice of health professionals working in early detection for infants with or at risk of cerebral palsy across New Zealand.

AIM: A diagnosis of cerebral palsy (CP) can, and should, be made as early as possible. This work describes current clinical practice around the awareness and use of diagnostic tools for the detection of CP in New Zealand (NZ). METHODS: A purpose-developed survey distributed electronically to NZ clinicians working with young children with or at risk of CP. RESULTS: A total of 159 clinicians (including paediatricians, physiotherapists and occupational therapists) participated in this cross-sectional study. Ninety-six percent were aware that a diagnosis of CP can be made by 12 months of age, with high levels of awareness of the use of magnetic resonance imaging (94%), Prechtl's qualitative assessment of general movements (GMs) (70%) and Hammersmith Infant Neurological Examination (HINE) (77%). Only 40% were aware of the HINE optimality scoring. Fifty-four clinicians provided a diagnosis of CP as part of their role: 48% never used the GMs or HINE to assess children <1 year, and 57% never used the HINE for children between 1 and 2 years. Clinicians not providing a diagnosis within their professional role (n = 104) also indicated infrequent use of assessment tools with 74% and 54% never using the GM's or HINE (respectively) in their assessment of children at risk of CP. Barriers to use included lack of time and funding, lack of clear pathways and management support. CONCLUSION: Despite high awareness, current use of international best practice tools in NZ clinical practice appears low. Multiple barriers are reported to the use of these tools, which need to be addressed to improve the timeliness of diagnosis.