Factors that impact on recruitment to vaccine trials in the context of a pandemic or epidemic: a qualitative evidence synthesis.

BACKGROUND: The World Health Organization declared the COVID-19 pandemic on 11 March 2020. Vaccine development and deployment were swiftly prioritised as a method to manage and control disease spread. The development of an effective vaccine relies on people's participation in randomised trials. Recruitment to vaccine trials is particularly challenging as it involves healthy volunteers who may have concerns around the potential risks and benefits associated with rapidly developed vaccines. OBJECTIVES: To explore the factors that influence a person's decision to participate in a vaccine trial in the context of a pandemic or epidemic. SEARCH METHODS: We used standard, extensive Cochrane search methods. The latest search date was June 2021. SELECTION CRITERIA: We included qualitative studies and mixed-methods studies with an identifiable qualitative component. We included studies that explored the perspectives of adults aged 18 years or older who were invited to take part in vaccine trials in the context of a pandemic or epidemic. DATA COLLECTION AND ANALYSIS: We assessed the title, abstracts and full texts identified by the search. We used a sampling frame to identify data-rich studies that represented a range of diseases and geographical spread. We used QSR NVivo to manage extracted data. We assessed methodological limitations using an adapted version of the Critical Skills Appraisal Programme (CASP) tool for qualitative studies. We used the 'best-fit framework approach' to analyse and synthesise the evidence from our included studies. We then used the Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) assessment to assess our confidence in each finding and develop implications for practice. MAIN RESULTS: We included 34 studies in our review. Most studies related to HIV vaccine trials. The other studies related to Ebola virus, tuberculosis, Zika virus and COVID-19. We developed 20 key findings, under three broad themes (with seven subthemes), that described the factors that people consider when deciding whether to take part in a vaccine trial for a pandemic or epidemic disease. Our GRADE-CERQual confidence was high in nine of the key findings, moderate in 10 key findings and low in one key finding. The main reason for downgrading review findings were concerns regarding the relevance and adequacy of the underlying data. As a result of the over-representation of HIV studies, our GRADE-CERQual assessment of some findings was downgraded in terms of relevance because the views described may not reflect those of people regarding vaccine trials for other pandemic or epidemic diseases. Adequacy relates to the degree of richness and quantity of data supporting a review finding. Moderate concerns about adequacy resulted in a downgrading of some review findings. Some factors were considered to be under the control of the trial team. These included how trial information was communicated and the inclusion of people in the community to help with trial information dissemination. Aspects of trial design were also considered under control of the trial team and included convenience of participation, provision of financial incentives and access to additional support services for those taking part in the trial. Other factors influencing people's decision to take part could be personal, from family, friends or wider society. From a personal perceptive, people had concerns about vaccine side effects, vaccine efficacy and possible impact on their daily lives (carer responsibilities, work, etc.). People were also influenced by their families, and the impact participation may have on relationships. The fear of stigma from society influenced the decision to take part. Also, from a societal perspective, the level of trust in governments' involvement in research and trial may influence a person's decision. Finally, the perceived rewards, both personal and societal, were influencing factors on the decision to participate. Personal rewards included access to a vaccine, improved health and improved disease knowledge, and a return to normality in the context of a pandemic or epidemic. Potential societal rewards included helping the community and contributing to science, often motivated by the memories of family and friends who had died from the disease. AUTHORS' CONCLUSIONS: This review identifies many of the factors that influence a person's decision to take part in a vaccine trial, and these reflect findings from reviews that examine trials more broadly. However, we also recognise some factors that become more important in connection with a vaccine trial in the context of a pandemic or epidemic. These factors include the potential stigma of taking part, the possible adverse effects of a vaccine, the added motivation for helping society, the role of community leaders in trial dissemination, and the level of trust placed in governments and companies developing vaccines. These specific influences need to be considered by trial teams when designing, and communicating about, vaccine trials in the context of a pandemic or epidemic.

Suicide and Self-Harm Risk Assessment: A Systematic Review of Prospective Research.

OBJECTIVE: Suicide and self-harm are widespread yet underreported. Risk assessment is key to effective self-harm and suicide prevention and management. There is contradicting evidence regarding the effectiveness of risk assessment tools in predicting self-harm and suicide risk. This systematic review examines the effect of risk assessment strategies on predicting suicide and self-harm outcomes among adult healthcare service users. METHOD: Electronic and gray literature databases were searched for prospective research. Studies were screened and selected by independent reviewers. Quality and level of evidence assessments were conducted. Due to study heterogeneity, we present a narrative synthesis under three categories: (1) suicide- and self-harm-related outcomes; (2) clinician assessment of suicide and self-harm risk; and (3) healthcare utilization due to self-harm or suicide. RESULTS: Twenty-one studies were included in this review. The SAD PERSONS Scale was the most used tool. It outperformed the Beck Scale for Suicide Ideation in predicting hospital admissions and stay following suicide and self-harm, yet it failed to predict repeat suicide and self-harm and was not recommended for routine use. There were mixed findings relating to clinician risk assessment, with some studies recommending clinician assessment over structured tools, whilst others found that clinician assessment failed to predict future attempts and deaths. CONCLUSIONS: There is insufficient evidence to support the use of any one tool, inclusive of clinician assessment of risk, for self-harm and suicidality. The discourse around risk assessment needs to move toward a broader discussion on the safety of patients who are at risk for self-harm and/or suicide.HIGHLIGHTSThere is insufficient evidence to support using standalone risk assessment tools.There are mixed findings relating to clinician assessment of risk.Structured professional judgment is widely accepted for risk assessment.

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. METHODS: A pre-post intervention pilot study was performed. The intervention was delivered over a 12-month period. Data were collected using surveys on demographic and work-related factors and experience of clinical supervision pre- and post intervention. RESULTS: Adaptability increased significantly between the pre- and post surveys. The post survey data showed finding time for clinical supervision scoring lowest with open-ended comments reinforcing this. The supervisees found the sessions to offer a safe place despite initial concerns. CONCLUSION: The peer-group model of clinical supervision allowed supervisees to build a rapport and trust with their colleagues and share experiences. IMPLICATIONS FOR NURSING MANAGEMENT: The benefits to participating in peer-group clinical supervision traversed the individual and organisation. These data support the implementation of such sessions while addressing workload and time pressures to aid participation.

Healthcare staff's views on responding to suicide and self-harm: Part II.

PURPOSE: To report on healthcare staff's views of the barriers to preventing suicide and self-harm. DESIGN AND METHODS: Using a qualitative approach, data were collected through "World Café" discussion forums and written submissions, and analyzed using reflexive thematic analysis. FINDINGS: Healthcare staff, including psychiatric nurses, perceived that a whole of society approach was needed for suicide and self-harm prevention. Support for those at the front line is needed as well as clear referral pathways and interagency working. PRACTICE IMPLICATIONS: Formalized support for staff working in healthcare should be given with a flexible and inclusive approach to service delivery adopted.

Healthcare staff's views on responding to suicide and self-harm: Part I.

PURPOSE: To explore healthcare staff's knowledge and awareness of, and responses to, suicide and self-harm. DESIGN AND METHODS: A qualitative design was adopted, and data were collected using a "World Café" approach (n = 143 participants), in addition to written submissions (n = 10). Data were analyzed using reflexive thematic analysis. FINDINGS: There was variation relating to awareness of and responses to suicide and self-harm. Participants highlighted the need for further staff education and training, and a review of standardized assessment tools and referral processes. PRACTICE IMPLICATIONS: Tailored training and education resources are required for healthcare staff. Clear protocols for assessing, treating, and referring people deemed at risk of suicide and self-harm are needed.

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. The aim of this systematic review is to synthesise the current available evidence related to unmet healthcare needs in adults with a range of childhood-onset neurodisabilities. Methods A systematic review of quantitative research studies of adults with a range of diagnoses that fall under the neurodisability umbrella and outcomes related to unmet healthcare needs will be undertaken. The Conducting Systematic Reviews and Meta-Analyses of Observational Studies (COSMOS-E) guidelines will be adhered to. Searches of key databases will be undertaken, and a two-phase screening process carried out by pairs of independent reviewers to select studies that meet the inclusion criteria. Data will be extracted using a purposefully designed form. Risk of bias will be assessed using the Joanna Briggs Institute Critical Appraisal Tools. If it is possible to pool prevalence data, a meta-analysis will be undertaken. Where pooling of data is not possible, a structured synthesis approach will be used, and results will be presented in tables and summarised narratively. Conclusions In recent years, there has been increased emphasis placed on promoting positive ageing and improving the healthcare experiences throughout the lifespan for people with neurodisabilities. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group.

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. This systematic review aims to describe international approaches in relation to defining serious reportable patient safety incidents. METHODS: Multiple electronic and gray literature databases were searched for articles published between 2009 and 2019. Empirical studies, reviews, national reports, and policies were included. A narrative synthesis was conducted because of study heterogeneity. RESULTS: A total of 50 articles were included. There was wide variation in the terminology used to represent serious reportable patient safety incidents. Several countries defined a specific subset of incidents, which are considered sufficiently serious, yet preventable if appropriate safety measures are taken. Terms such as "never events," "serious reportable events," or "always review and report" were used. The following dimensions were identified to define a serious reportable patient safety incident: (1) incidents being largely preventable; (2) having the potential for significant learning; (3) causing serious harm or have the potential to cause serious harm; (4) being identifiable, measurable, and feasible for inclusion in an incident reporting system; and (5) running the risk of recurrence. CONCLUSIONS: Variations in terminology and reporting systems between countries might contribute to missed opportunities for learning. International standardized definitions and blame-free reporting systems would enable comparison and international learning to enhance patient safety.

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. DATA EXTRACTION: Data were extracted from 19 documents using an a priori framework developed from the published literature. RESULTS: We organized data under five themes: ethical frameworks; guidance on ethical review; consent, vulnerable groups and personal health data. Quality improvement activity tended to be outside the scope of the ethics frameworks in most countries. Only New Zealand had integrated national ethics standards for both research and quality improvement. Across countries, there is consensus that this activity should not be automatically exempted from ethical review but requires proportionate review or organizational oversight for minimal risk projects. In the majority of countries, there is a lack of guidance on participant consent, use of personal health information and inclusion of vulnerable groups in routine quality improvement. CONCLUSION: Where countries fail to provide specific ethics frameworks for quality improvement, guidance is dispersed across several organizations which may lack legal certainty. Our review demonstrates a need for appropriate oversight and responsive infrastructure for quality improvement underpinned by ethical frameworks that build equivalence with research oversight. It outlines aspects of good practice, especially The New Zealand framework that integrates research and quality improvement ethics.

Staff awareness of suicide and self-harm risk in healthcare settings: A mixed-methods systematic review.

BACKGROUND: Suicide risk screening in healthcare settings plays a significant role in suicide prevention. Healthcare staff who are poorly informed about self-harm and suicide risk are less likely to identify and subsequently screen at-risk individuals. This mixed-method systematic review aimed to appraise and synthesise evidence from studies that explored and promoted healthcare staff's knowledge and awareness of suicide and self-harm risk in healthcare settings. METHODS: Electronic databases (CINAHL, MEDLINE, APA PsycInfo, APA PsycARTICLES, Psychology and behavioural Science Collection, ERIC, and SocINDEX), the Cochrane Library, and various grey literature databases were searched for relevant studies. The level of evidence and methodological quality of the included studies were assessed. RESULTS: Eighteen empirical studies were included. Levels of knowledge about suicide and self-harm risk varied significantly across the reviewed studies. Face-to-face group training and educational programmes, digital or online educational programmes, and an educational poster campaign were amongst the strategies used to promote awareness of suicide and self-harm risk, with the majority marginally succeeding in doing so. LIMITATIONS: The reviewed studies were heterogeneous in terms of design, interventions, and outcome measures which made it difficult to make comparisons. The overall level of scientific evidence was classified as being relatively low. The lack of blinding and lack of a control group were amongst the limitations for experimental studies. CONCLUSIONS: Long-term, routine face-to-face group training programmes should be established to educate healthcare staff about suicide risk across all professions and in specific patient groups.

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. METHODS: A modified e-Delphi technique with 2 rounds of rating was used. After a literature review and expert consultation, a multidisciplinary panel developed 40 statements. Statements that did not achieve consensus in round 1 were re-presented in round 2, together with new statements developed after participant feedback. Health-care professionals with expertise in caring for people with COPD were asked to rate the importance of including each of the 40 topics in future educational interventions related to ACP and COPD by using a 5-point Likert scale. Average scores for each topic were calculated and expressed as percentages. Consensus on each topic was achieved if it obtained a score of ≥80%. RESULTS: Thirty-eight health-care professionals were invited to participate, of whom, 21 (55%) took part in both rounds. Consensus was achieved for 32 of 40 statements (80%) in round 1 and for 5 of 10 statements (50%) in round 2. All statements relating to "COPD and palliative care" and "legislation for ACP" achieved consensus after one round. CONCLUSIONS: This study uncovered specific topics that related to ACP and COPD that health-care professionals believe should be included in future educational interventions. In particular, there is a clear need for training that addresses the legal issues surrounding ACP, and information on the best timing and content of ACP discussions with patients with COPD. Such training may enable health-care professionals to incorporate ACP into routine COPD management and, ultimately, improve patient care.

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. AIM: The aims of this study were to (a) determine what caregivers value most about the CCS and (b) explore caregiver perceptions of care. METHODS: All caregivers of children enrolled in the RCH CCS in April 2017 were invited to participate. A purposefully designed survey explored caregiver perceptions of care, including patient quality of care; the extent to which the CCS components added value and satisfaction; and frequency of contact. Participants were also invited to answer open-ended questions and provide general comments. RESULTS: Responses were received from 53 families (51%). We found that 24-hr phone advice, coordination of appointments, a key contact, and access to timely information were the most important components of the service. More than 90% of caregivers indicated that they were satisfied with care and that the CCS improved their child's quality of care. Coordination, communication, family-centred care, quality care, and access were emergent themes within comments. CONCLUSION: This study provides important information regarding the design and operation of services for CMC throughout Australia and further afield. Our findings highlight the importance of the key contact and family-centred care. This has implications for practice, as maintaining service quality, as the CCS expands and is implemented more widely, is a major sustainability challenge. It is crucial that we have a detailed understanding of what elements are required to support effective care coordination, to achieve successful implementation on a larger scale.

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. METHODS: A scoping review of the literature was conducted following the Arksey and O'Malley framework. Original research studies of any design were included. RESULTS: Twenty-eight studies were included. Across studies, there was agreement that ACP should be incorporated into routine COPD management. There was evidence that this does not occur in everyday practice, with conversations tending to focus on day-to-day symptom management. Barriers included prognosis uncertainty, insufficient time and training, and a lack of protocols for who is responsible for initiating ACP. Facilitators included the use of transition points for identifying the appropriate time to initiate ACP, and an increased focus on ACP in professional education. The occurrence of repeated episodes of acute care was identified as a key transition point for identifying the palliative stage of COPD and an appropriate time to initiate ACP. CONCLUSION: The findings of this review confirm agreement among health care professionals and patients with COPD and their carers that ACP should be incorporated into routine COPD management. The use of transition points may help health care professionals overcome the barrier of prognosis uncertainty and identify patients who might benefit from ACP.

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. RESULTS: There were 143 participants (109 general practitioners, 25 nurses, 7 physiotherapists and 2 consultant physicians). The majority (82%, n=117) cared for patients with COPD weekly, but only 23% (n=33) had initiated ACP with a patient with COPD over the previous 6 months. Overall, 59% (n=85) answered ≥6 of 8 general knowledge questions correctly. Participants demonstrated positive attitudes towards ACP (mean score 3.6/5.0), but confidence levels were low (2.2/4.0). Most thought ACP was appropriate for patients with severe or very severe COPD (71%, n=101%, and 91%, n=130, respectively) but were unsure or felt that it was not appropriate for those with mild-moderate COPD. However, almost all participants (97%, n=139) stated that if a patient expressed a desire to have ACP discussions, they would comply. Topics most likely to be discussed related to diagnosis and treatment options. Death and end-of-life issues were rarely discussed. The death of a family member or friend and participation in support groups were identified as new 'triggers' for initiating ACP. CONCLUSIONS: Targeted education to improve general knowledge and confidence levels among healthcare professionals, together with initiatives to increase public awareness of ACP so that patients themselves might be more inclined to start the discussion, may help increase the uptake of ACP for this patient group.

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. RESULTS: Over 5 years, there were 234 ED presentations due to feeding tube-related complaints among a CP cohort (n = 2183). ED notes were located for 183 of the 234 presentations. The majority of presentations (90%) involved children with severe gross motor impairment. A total of 46% of presentations (n = 84) was triaged as lower urgency, and 68% (n = 124) took place between 08:00 am and 06:00 pm. The most common presenting complaint was tube dislodgement (n = 105; 70%). No investigations were recorded in the majority of cases, and in almost 90% of cases, the feeding tube was successfully replaced in the ED, usually by an ED physician (n = 74) and less frequently by a surgeon (n = 9), gastroenterologist (n = 2) or nurse (n = 8); 9% (n = 17) resulted in a hospital admission. CONCLUSIONS: Most ED presentations due to feeding tube complaints in children with CP are in children with severe gross motor impairment but are able to be managed in the ED. As such, it is likely that care givers and other health professionals could manage some of the complications experienced in primary health-care settings closer to home.

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. Two authors independently screened studies according to Preferred Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Pain outcomes were categorized within a biopsychosocial pain framework, with pain prevalence extracted for all recall periods and measurement types. RESULTS: One hundred and six publications from 57 studies met inclusion criteria. Pain prevalence varied widely from 14 per cent to 76 per cent and was higher in females, older age groups, and those classified within Gross Motor Function Classification System level V. Pain was most frequent in the lower limbs, back, and abdomen and associated with reduced quality of life or health status. The influence of pain on psychological functioning, interference, and participation was inconclusive. INTERPRETATION: Variation exists in reported pain prevalence because of sampling bias, inconsistent measurement, varying recall periods, and use of different participant age ranges. WHAT THIS PAPER ADDS: Pain prevalence varies from 14 per cent to 76 per cent in children and young adults with cerebral palsy. Pain is more prevalent in females, older age groups, and children in Gross Motor Function Classification System level V.

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. Univariable logistic regression was used to compare dyskinesia with spasticity, with and without adjustment for topography. Neuroimaging classifications were extracted from the register. Of 243 children with spasticity or dyskinesia, the predominant motor type was spastic in 183 and dyskinetic in 56. Dyskinesia was associated with comparatively poorer function, total body involvement, and gray matter injury. After adjustment for topography, dyskinesia was associated with similar or better function. The study suggests that practical tools routinely incorporated into clinical practice would facilitate accurate and reliable classification of predominant and secondary motor types, topography, and functional abilities.

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. Survival analysis was performed in a 30-year birth cohort (n=3248). RESULTS: Intellectual disability, present in 45% of the cohort, was associated with non-ambulation (47% vs 8%), later walking (mean 2y 7mo vs 1y 9mo), hypotonic (8% vs 1%) or dyskinetic (9% vs 5%) CP, a quadriplegic pattern of motor impairment (42% vs 5%), epilepsy (52% vs 12%), more emergency and multi-day hospital admissions, and reduced 35-year survival (96% vs 71%). Grey matter injuries (13% vs 6%), malformations (18% vs 6%), and miscellaneous neuroimaging patterns (12% vs 4%) were more common in people with intellectual disability. INTERPRETATION: Intellectual disability adds substantially to the overall medical complexity in CP and may increase health and mortality disparities. WHAT THIS STUDY ADDS: Cerebral maldevelopments and grey matter injuries are associated with higher intellectual disability rates. Health care is more 'crisis-driven' and 'reactive' in children with co-occurring intellectual disability. Length of survival is reduced in individuals with CP and co-occurring intellectual disability.

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. Data on emergency department presentations for the CP cohort occurring between 2007 and 2014 and population control data were obtained. RESULTS: The CP cohort (n=1748) had 7015 emergency department presentations during the 7-year period, accounting for 0.4% of the 1.69 million age-specific presentations during that time. The number of annual presentations per 1000 children rose with increasing CP severity. Compared with presentations among the general population, higher proportions of presentations among the CP cohort were preceded by ambulance arrivals (27% vs 8%), triaged as urgent (66% vs 32%), and required hospital admission (38% vs 12%). INTERPRETATION: The marked differences in presentations between the CP cohort and the general population in the proportions that were urgent and required ambulance arrivals and hospital admissions was an important finding. Strategies to ensure appropriate use of services, including encouragement to seek earlier assistance from primary care providers, may prevent problems escalating to the need for urgent care. WHAT THIS PAPER ADDS: Children with cerebral palsy (CP) account for 0.4% of childhood emergency department presentations. More emergency department presentations among children with CP require ambulance arrival. More CP emergency department presentations are urgent and require hospital admission. Traditional emergency department triage scales seem less accurate for this group.

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. Data pertaining to the admissions of a CP cohort (n=1748) that took place between 2007 and 2014 were extracted. Population data were also obtained. RESULTS: Overall, 80% of the CP cohort (n=1401) had at least admission between 2007 and 2014, accounting for 11 012 admissions or 1.5% of all admissions in their age group. Compared to general population admissions, CP admissions were more costly and more likely to be elective (66% vs 57%; p<0.001), medical (71% vs 57%; p<0.001), and to take place in metropolitan hospitals (92% vs 78%; p<0.001). Increased CP severity and complexity were associated with having more admissions and a higher proportion of admissions attributable to respiratory illness. INTERPRETATION: By linking with administrative data sets, CP registers may be useful for health services research and inform health service delivery.

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. Information on family characteristics and finances was also collected. Data on CP severity and complexity were extracted from the CP Register. RESULTS: Three hundred and fifty parents and carers (39%) participated. Of these, 83% reported that their child had ≥1 appointment with a general practitioner over the preceding 12 months, while 84% had ≥1 appointment with a public or private paediatric medical specialist. Overall, 58% of children saw 2-5 different paediatric medical specialists, while 9% had appointments with ≥6 clinicians. Children with severe and complex CP were more likely to have had ≥1 appointment with a publically funded paediatric medical specialist and had seen a greater number of different clinicians over the study period. Family characteristics were not associated with service use. CONCLUSIONS: Children with CP are managed by a number of paediatric medical specialists, and they continue to see a range of specialists throughout adolescence. In Victoria, differences in service use are not based on family characteristics; instead the highest service users are those with severe and complex CP. For this group, care co-ordination and information sharing between treating clinicians are important, if gaps in care are to be avoided.