Abstract
This report from the New Zealand Child and Youth Epidemiology Service (NZCYES) aims to present data and information to assist in commissioning services that can contribute to improved health and wellbeing of children and young people in each locality.
This 2022 report focuses on children and young people with long-term health conditions. Some of these conditions are present at birth, and others develop during childhood and adolescence. Once diagnosed, the conditions may be ongoing, long term, or recurrent. Children with these conditions usually require lifelong health care, and may experience limitations in day-to-day activities and interrupted education. In addition, management of the conditions can impact on whānau wellbeing. Adolescence usually signals the need for children with long-term conditions to transition into adult health services. This is a key aspect of health service commissioning and delivery in which data are needed to monitor positive and beneficial transitions that promote equity and wellbeing into adulthood.
The following indicators included in this report were identified in the indicator framework developed for the NZCYES through literature review and consultation with the child health workforce, and by ongoing discussion with child health service providers:
• Cystic fibrosis
• Diabetes
• Cerebral palsy
• Epilepsy
• Bronchiectasis (non-cystic fibrosis)
• Inflammatory bowel disease
Administrative data were extracted from National Collections, Surveys and Registers to provide an epidemiological background to the clinical context of day-to-day health care. Indicators were analysed to provide a descriptive account of mortality and of hospitalisation events, as well as data reflecting community prevalence where available. The former district health boards were in place through the time frame of this report, so reporting is still using these entities in analysis. It is important to note that the locality is the district health board in which the child or young person is usually resident. If a child is transferred to a larger centre for treatment, they will still be identified with their district of residence in this report.
Each indicator chapter begins with a description of the condition. The ‘data sources and methods’ boxes provide technical information about the specific indicator and data sources. Analysis presents information about deaths from the condition, and patterns of hospitalisation over time, and by demographic factors including age group, ethnicity, and social and material deprivation in the area where the child usually lives. The extent to which equity in health outcomes is being achieved, or not, is reflected in the rates of hospitalisation for different population groups of children. Each chapter concludes with an ‘evidence for good practice’ section which is a synthesis of national and international guidelines and an overview of recent research to inform service provision. There is a focus on equity and on achieving good outcomes for all children and young people.
The report appendices describe the processes used in compiling information for these reports, including the clinical codes relevant to each indicator, information about data sources and their limitations, classification of ethnicity and social and material deprivation, and statistical methods used in data analyses.
The NZCYES is very grateful to all those who have provided feedback on draft versions of each chapter. The comments and advice received have strengthened the report as a whole. Interpreting the implications and importance of the data in this report requires the participation of those actively involved in child health in each district. This report is provided in anticipation of it being used at a local level alongside clinical and professional knowledge and expertise.
A major limitation of this report is that it cannot address questions that require outpatient data, which are currently not available at a national level with diagnostic classifications. Developing systems that can provide a fuller picture of outpatient and primary health care data is an important priority for Te Whatu Ora and Te Aka Whai Ora to inform child health service planning at national and regional levels and to monitor the achievement of equity in child health outcomes.
In summary, the 2022 report from NZCYES presents data and interpretation on selected indicators of child and youth health status. The most recent data available at the time of writing were extracted in 2022 from a range of administrative datasets. It is provided with the intent of informing health service planning and delivery that acknowledges the burden of care associated with long-term health needs in childhood and adolescence, and promotes equitable health outcomes for these children and their whānau.