Comprehensive care programmes for children with medical complexity.

Background: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been suggested that improving aspects of healthcare delivery for CMC improves health- and quality of life-related outcomes for children and their families and reduces healthcare-related expenditure.

Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review.

Background Many adults with childhood-onset neurodisabilities, such as those with intellectual disability or cerebral palsy, report difficulties accessing the healthcare that they require when they are no longer eligible for paediatric services. Compared to the general population, this population is at greater risk of developing many ageing-related diseases and has higher rates of preventable deaths and premature mortality. Addressing unmet healthcare needs is essential to ensuring equitable access in a quality healthcare system.

Nurses and midwives' experiences with peer-group clinical supervision intervention: A pilot study.

Aim: This study aimed to evaluate differences in supervisees' understanding of clinical supervision and their perceptions of organisational functioning before and after engaging in peer-group clinical supervision.

Background: Protected reflective time allows discussion of complex issues affecting health care. Peer-group clinical supervision is one model of clinical supervision that could facilitate this, but it is poorly understood.

Ethical frameworks for quality improvement activities: an analysis of international practice.

Purpose: To examine international approaches to the ethical oversight and regulation of quality improvement and clinical audit in healthcare systems.

Data Sources: We searched grey literature including websites of national research and ethics regulatory bodies and health departments of selected countries.

Study Selection: National guidance documents were included from six countries: Ireland, England, Australia, New Zealand, the United States of America and Canada.

An International Perspective on Definitions and Terminology Used to Describe Serious Reportable Patient Safety Incidents: A Systematic Review.

Objectives: Patients are unintentionally, yet frequently, harmed in situations that are deemed preventable. Incident reporting systems help prevent harm, yet there is considerable variability in how patient safety incidents are reported. This may lead to inconsistent or unnecessary patterns of incident reporting and failures to identify serious patient safety incidents.

Advance Care Planning for Individuals With Chronic Obstructive Pulmonary Disease: A Scoping Review of the Literature.

Context: Individuals with chronic obstructive pulmonary disease (COPD) typically experience a gradual worsening of the illness in the years before death. Owing to difficulties in predicting the disease trajectory or the timing of acute exacerbations, advance care planning (ACP) may be of particular importance for individuals with COPD.

Objectives: The objective of this study was to review and summarize the available literature on current practices around ACP in COPD.

An e-Delphi Study to Identify Priority Areas for Education on Advance Care Planning in COPD Management.

Background: Individuals with COPD typically experience a gradual deterioration in health, with exacerbations and increased health-care utilization in the years before death. As such, adequate planning of future care is necessary. The objective of this research was to identify gaps in health-care professionals' knowledge related to advance care planning (ACP) for patients with COPD and to prioritize content of future educational interventions for health-care professionals accordingly.

Important components of a programme for children with medical complexity: An Australian perspective.

Background: Children with medical complexity (CMC) have high care needs, often unmet by traditional healthcare models. In response to this need, the Complex Care Service (CCS) at The Royal Children's Hospital (RCH), Melbourne was created. Although preliminary parent satisfaction data were available, we lacked knowledge of how the various components of the expanded service were valued and contributed to overall caregiver satisfaction.

Advance care planning in COPD: guidance development for healthcare professionals.

Objectives: To examine current practices, attitudes and levels of confidence related to advance care planning (ACP) in patients with chronic obstructive pulmonary disease (COPD) among healthcare professionals working in Ireland. This will inform future clinical guidance development.

Methods: A cross-sectional survey of healthcare professionals.

Paediatric emergency department presentations due to feeding tube complications in children with cerebral palsy.

Aim: To describe the characteristics of emergency department (ED) presentations due to complications from gastrostomy or gastrojejunal feeding tubes among children with cerebral palsy (CP), the complexity of complications and the management approaches taken.

Methods: The Victorian CP Register was linked to the ED databases of Victoria's two tertiary paediatric hospitals, and data on presentations due to feeding tube complications were identified based on discharge diagnosis codes. Additional data on presentations were extracted from medical records.

Prevalence and characteristics of pain in children and young adults with cerebral palsy: a systematic review.

Aim: The primary aim of this review is to evaluate the evidence for pain prevalence in children and young adults with cerebral palsy. Secondary aims are to identify pain characteristics and types of pain measurement used in this population.

Method: Ovid MEDLINE, Embase, CINAHL Plus, and PubMed were searched in October 2016 and updated in November 2017.

Dyskinetic vs Spastic Cerebral Palsy: A Cross-sectional Study Comparing Functional Profiles, Comorbidities, and Brain Imaging Patterns.

The authors aimed to describe the distribution of predominant and secondary motor types and compare functional profiles, comorbidities, and brain imaging patterns between dyskinetic and spastic cerebral palsy. Children recruited from a cerebral palsy register were assessed at age 5, 10, or 15. Motor types, topography, functional classifications, and comorbidities were recorded.

Intellectual disability in cerebral palsy: a population-based retrospective study.

Aim: A population-based observational study design was used to describe the epidemiology of intellectual disability in cerebral palsy (CP) in terms of clinical and neuroimaging associations, and to report the impact of intellectual disability on utilization of health services and length of survival.

Method: Population CP registry data were used to retrospectively assess the frequency of intellectual disability and strength of associations between intellectual disability and mobility, epilepsy, vision, hearing, communication, and neuroimaging patterns (n=1141). Data linkage was undertaken to assess usage of hospital inpatient and emergency department services.

Comparing emergency department presentations among children with cerebral palsy with general childhood presentations: a data linkage study.

Aim: The aims of this study were to estimate the proportion of emergency department presentations attributable to children with cerebral palsy (CP), investigate the frequency of emergency department presentations in a CP cohort, and compare emergency department presentations among children with CP with those of other children.

Method: This was a retrospective cohort study. The Victorian Cerebral Palsy Register was linked to the Victorian Emergency Minimum Dataset.

Hospital admissions in children with cerebral palsy: a data linkage study.

Aim: The overall aim was to investigate the feasibility and utility of linking a cerebral palsy (CP) register to an administrative data set for health services research purposes. We sought to compare CP hospital admissions to general childhood population admissions, and identify factors associated with type and frequency of admissions in a CP cohort.

Method: The CP register for Victoria, Australia was linked to the state's hospital admissions database.

Medical service use in children with cerebral palsy: The role of child and family factors characteristics.

Aim: The aim of the study was to investigate the patterns of medical service use in children with cerebral palsy (CP), taking into account child and family characteristics.

Methods: Nine hundred and one parents and carers of children registered with the Victorian CP Register were invited to complete a survey. Participants were asked about their child's appointments with general practitioners and public and private paediatric medical specialists over the preceding 12 months.

The National Disability Insurance Scheme: a time for real change in Australia.

In Australia, the supports and services for persons with disabilities have long been underfunded and fragmented. Often, individuals did not receive the services they needed, but rather the services they were entitled to based on how or when they acquired their disability. As a result, there was an increasing reliance on ageing carers, a lack of permanent and respite accommodation, and reduced employment and educational opportunities.

A special supplement: findings from the Australian Cerebral Palsy Register, birth years 1993 to 2006.

Aim: To briefly outline the strengths and limitations of cerebral palsy (CP) registers, and to report on findings of the Australian Cerebral Palsy Register (ACPR) pertaining to a population cohort of children with CP.

Method: De-identified data were extracted from the ACPR for people with CP in birth years 1993 to 2006, from South Australia, Victoria, and Western Australia. Live birth prevalence of CP was estimated and risk factors described.

Biological sex and the risk of cerebral palsy in Victoria, Australia.

Aim: Males typically outnumber females in cerebral palsy (CP) cohorts. To better understand this 'male disadvantage' and provide insight into causal pathways to CP, this study used 1983 to 2009 Australian CP and population birth cohorts to identify associations and trends with respect to biological sex and CP.

Method: Within birth gestation groups, sex ratios were calculated to evaluate any male excess in the CP cohort compared with livebirths, neonatal deaths, neonatal mortality and survival rates, neonatal survivors, and CP rates in survivors.

Temporal trends in cerebral palsy by impairment severity and birth gestation.

Aim: Our aim was to build on previous research indicating that rates of cerebral palsy (CP) in the Australian state of Victoria are declining, and examine whether severity of impairments is also decreasing.

Method: Data on individuals with CP were extracted from the Victorian Cerebral Palsy Register for birth years 1983 to 2009. The yearly rates of dichotomized categories for gross motor function, motor laterality, intellectual impairment, and epilepsy per 1000 neonatal survivors and proportions in the CP cohort were tabulated and plotted by birth gestation.