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To describe post-neonatally acquired (PNN) cerebral palsy (CP) in terms of temporal trends in prevalence, clinical and sociodemographic profiles, known causes and associations between causes, and sociodemographic variables.Numerator data, a count of children with PNN-CP confirmed at 5 years of age (n = 523), was drawn from two Australian state CP registers (birth years 1973-2012). Poisson regression was used to investigate temporal trends in the prevalence of PNN-CP by 5-year intervals, calculated per 10 000 live births. Using data from all state and territory Australian CP registers (n = 469), distributions of clinical characteristics, PNN-CP causes, and sociodemographic factors were tabulated (birth years 1995-2012). χA significant temporal decline in PNN-CP in Victoria (p = 0.047) and Western Australia (p = 0.033) was observed. The most common proximal causes of PNN-CP were cerebrovascular accidents (34%, n = 158), infection (25%, n = 117), and non-accidental injuries (12%, n = 58). Children born to teenage mothers, Aboriginal and/or Torres Strait Islander mothers, or children born in remote areas were over-represented in this cohort compared with reference data (all p ≤ 0.001). Infectious causes were strongly associated with teenage motherhood (odds ratio 3.0 [95% confidence interval 1.1-8.2], p = 0.028) and remote living (odds ratio 4.5 [95% confidence interval 2.0-10.2], p 0.001).Although prevalence of PNN-CP has declined, the over-representation of priority populations, and the relative severity of a condition that is largely preventable, suggest the need for more specific primary preventive measures and support.Prevalence of post-neonatally acquired (PNN) cerebral palsy (CP) in Australia significantly declined between 1973 and 2012. Cerebrovascular accidents are the most common proximal cause of PNN-CP. Children born in remote areas are at greater risk of PNN-CP.

As the rates of cancer incidence and survival increase in Canada, more patients are living in the post-treatment survivorship phase of their cancer journey. Identifying cancer survivors’ concerns and unmet needs is important so that health care teams can provide relevant information, supports, and resources. Secondary data analysis was carried out on the Alberta patient sample from the 2016 Pan-Canadian Transitions Study survey, designed by the Canadian Partnership Against Cancer. The top concerns for patients treated for five different cancers were examined descriptively and compared. A question about information that patients received post-treatment was also descriptively analyzed. Binary logistic regressions were conducted for each tumour group, using the top three concerns for each group as outcomes and a variety of demographic factors as independent variables. There were 1833 valid respondents in the Alberta sample. Fatigue and anxiety were top concerns for multiple tumour groups. Most patients received more information about treatment side effects than about signs of recurrence and community resources. Within certain tumour groups, younger patients had higher odds of having concerns, particularly anxiety. Awareness of the common and unique concerns experienced by cancer survivors post-treatment enables health care providers to tailor care and resources to help patients manage their symptoms and concerns. These findings address gaps in knowledge around the cancer survivorship phase and may be applicable to cancer programs and primary care providers in Alberta and beyond.

To investigate temporal trends in birth prevalence, disability severity, and motor type for singletons with prenatal or perinatally acquired cerebral palsy (CP).Numerator data, number of children with CP born a singleton between 1995 and 2014, confirmed at 5 years of age, were drawn from three state registers with population-level ascertainment. Birth prevalence estimates and 95% confidence intervals (CI) were calculated per 1000 singleton live births for the three states combined, overall, by gestational age group, by dichotomized disability severity, and spastic laterality. Poisson regression models were used to analyse trends. Using data from all eight registers, trends in the proportional distribution of CP subtypes overall and stratified by gestational age were examined.Birth prevalence of CP declined from 1.8 (95% CI 1.6-2.0) in 1995 to 1996 to 1.2 (95% CI 1.1-1.4) in 2013 to 2014 (average 5% per 2-year epoch, p 0.001). Declines in birth prevalence were observed across all gestational age groups with the largest decline in children born at28 weeks (average 8% per epoch, p 0.001). Prevalence of moderate-severe disability declined for children born at28 and ≥37 weeks (average 11% and 7% per epoch respectively, p 0.001). The proportions of bilateral spastic CP declined (p 0.001) at28 weeks (p = 0.014) and ≥37 weeks (p 0.001). The proportion of children with dyskinesia increased (28-31 weeks: p = 0.021, 32-36 weeks: p = 0.001, and ≥37 weeks: p 0.001).Birth prevalence of CP and moderate-severe disability (28 and ≥37 weeks) declined in Australian singletons between 1995 and 2014, reflecting changes in prenatal and perinatal care over time.Declines in birth prevalence of prenatal or perinatally acquired cerebral palsy were observed for singletons born in Australia between 1995 and 2014. These declines were evident across all gestational age groups. Declines in birth prevalence of moderate-severe disability were observed for children born at28 weeks and ≥37 weeks.

The Ambulatory Oncology Patient Satisfaction Survey (AOPSS) is a standardized instrument to assess the overall cancer patient experience. This study retrospectively investigated differences in care experiences and satisfaction among ambulatory oncology patients who self-identified as receiving outpatient therapies for curative intent or for symptom or disease control. This cross-sectional study analyzed data from the AOPSS collected between February and April 2019 within the provincial cancer program in Alberta, Canada. There were 2104 participants who returned the survey, representing a 52.7% response rate. This nationally validated survey gathers patient care experiences and satisfaction across six domains of person-centred care. Treatment intent was characterized by adding a new &ldquo, goal of treatment&rdquo, question. Statistical analysis was performed using Mann&ndash, Whitney U tests and analysis of covariance (ANCOVAs). Cancer patients&rsquo, treatment goals were found to be significantly associated with key patient characteristics like age, sex, tumour group, and the locations where they received care. Patients whose self-identified goal of treatment was to cure their cancer reported significantly higher levels of satisfaction and a more positive experience in five out of the six person-centred care domains. Results identify marked differences in satisfaction and experience between these two patient groups even though they both received care in the same ambulatory environments. A better understanding of the experience and satisfaction of non-curative cancer patients could allow for a more holistic and supportive approach to patient care. In addition, an early palliative approach to care is recommended for improved patient outcomes.

PURPOSE This study reports on a mixed methods evaluation conducted within a provincial cancer program in Alberta, Canada. The purpose was to capture key learnings from a rapid virtual care implementation because of the COVID-19 pandemic and to understand the impact on patient and staff experiences. METHODS Administrative data were collected for 21,362 patients who had at least one virtual or in-person visit to any provincial cancer center from April 1, 2020, to June 10, 2020. Patient surveys were conducted with 397 randomly selected patients who had received a virtual visit. Surveys were also conducted with 396 Cancer Care Alberta staff. RESULTS 14,906 virtual visits took place in this period, and about 40% of weekly visits were virtual. Significant differences were observed in both patient-reported symptom questionnaire completion rates and referrals to supportive care services between patients seen in-person and virtually. Patients receiving active treatments reported significantly lower levels of satisfaction with virtual visits than those seen for follow-up, but overall 90% of patients indicated interest in receiving virtual care in the future. Staff thought virtual visits increased patients' access to care but less than one third (31.5%) felt confident meeting patients' emotional needs and having conversations about disease progression and/or end of life virtually. CONCLUSION The COVID-19 pandemic has driven the rapid implementation of virtual visits for cancer care delivery in health care settings. The findings from this mixed methods evaluation provide a concrete set of considerations for organizations looking to develop a large-scale, enduring virtual care strategy.

Patient-reported experience is associated with improved patient safety and clinical outcomes. Quality improvement programs rely on validated patient-reported experience measures (PREMs) to design projects. This descriptive study compares the experience of cancer patients treated with radiation as recorded through the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) or as recorded through Your Voice Matters (YVM) between February and August 2019. Six questions were compared (“overall experience with care”, “discussion of worries”, “involvement in decisions”, “trusting providers with confidential information”, “providing family with information”, and “knowing who to contact”). Positive experience scores were calculated by cohort and by tumor groups. Multivariable logistic regression models evaluated factors associated with positive experience. Two cohorts (220 and 200 patients) met the eligibility criteria for the AOPSS and YVM, respectively. Positive experience was reported similarly between the two PREMs for “overall experience with care”, “discussion of worries”, and “trusting providers with confidential information” with a score difference of 1–4% at the cohort level. Positive experience score difference ranged from 5% to 44% across questions at the tumor group level. Different experience gaps were identified with the two measures, mainly at the tumor group level. Programs interested in using these PREMS might consider this when designing projects.

Background: In 2019, cancer patients comprised over 65% of all individuals who requested and received Medical Assistance in Dying (MAID) in Canada. This descriptive study sought to understand the self-reported symptom burden and complexity of cancer patients in the 12 months prior to receiving MAID in Alberta. Methods: Between July 2017 and January 2019, 337 cancer patients received MAID in Alberta. Patient characteristics were descriptively analyzed. As such, 193 patients (57.3%) completed at least one routine symptom-reporting questionnaire in their last year of life. Mixed effects models and generalized estimating equations were utilized to examine the trajectories of individual symptoms and overall symptom complexity within the cohort over this time. Results: The results revealed that all nine self-reported symptoms, and the overall symptom complexity of the cohort, increased as patients’ MAID provision date approached, particularly in the last 3 months of life. While less than 20% of patients experienced high symptom complexity 12 months prior to MAID, this increased to 60% in the month of MAID provision. Conclusions: Cancer patients in this cohort experienced increased symptom burden and complexity leading up to their death. These findings could serve as a flag to clinicians to closely monitor advanced cancer patients’ symptoms, and provide appropriate support and interventions as needed.

The collection of patient reported outcomes (pros) is a standard of care in many cancer organizations. In Alberta, pros have been integrated into routine clinical practice since 2012. This longitudinal collection of pros provides a wealth of data and a unique research opportunity to improve cancer care. The goal of this pro data initiative is to establish a robust repository of information for ongoing clinical care and research focused on pros. In this paper, we describe the rationale, scope, and design of this initiative. The initiative consists of pros and other administrative health data from the province of Alberta. Retrieval of health data from a variety of provincially governed sources will create a platform of information on pros, health outcomes, cancer data, other health conditions, and demographics. The aims of the initiative are to use the data to inform best practices at the point of care, to conduct health services research, particularly clinical epidemiology studies, and to evaluate a variety of pro-related outcomes. Because this effort represents our first to integrate routinely collected pros with other administrative health data, a unique and robust data repository will be created. The ability to integrate various types of data will provide a comprehensive mechanism to evaluate a variety of outcomes. Because cancer care in Alberta is governed by a single health care system, the data linkages will include population health and psychosocial cancer data. We anticipate that research related to this initiative will ultimately help to inform more patient-centred care.

Background Likely duration of survival of children described as having cerebral palsy is of considerable interest to individuals with cerebral palsy, their families, carers, health professionals, health economists and insurers. The aim of this paper is to describe patterns of survival and mortality to the sixth decade in a geographically defined population of people with cerebral palsy stratified according to the clinical description of their impairments in early childhood. Methods Identifiers of persons born in Western Australia 1956–2011, registered with cerebral palsy on the Western Australian Register of Developmental Anomalies and surviving at least 12 months, were linked to the Australian National Death Index in December 2014. Patterns of mortality were investigated using survival analysis methods. Results Of 3185 eligible persons, 436 (13.7%) had died. Of that sample the 22% with the mildest impairment had survival patterns similar to the general population. Mortality increased with increasing severity of impairment. Of 349 (75%) with available cause of death data, 58.6% were attributed to respiratory causes, including 171 (49%) to pneumonia at a mean age of 14.6 (sd 13.4) years of which 77 (45%) were attributed to aspiration. For the most severely impaired, early childhood mortality increased in succeeding decades of birth cohorts from 1950s to 1990 with 20% dying by 4 years of age in the 1981–1990 birth cohort; it then decreased for subsequent birth cohorts, 20% mortality not being attained until 15 years of age. However by 20 years of age mortality of the most severely impaired born in the 1991–2000 birth cohort exceeded that of all other birth cohorts. Remaining life expectancies by age to 50 years have been estimated for two strata with more severe impairments. Conclusion For 22% of individuals with cerebral palsy with mild impairment survival to 58 years is similar to that of the general population. Since 1990 mortality for those with severe cerebral palsy in Western Australia has tended to shift from childhood to early adulthood.

Purpose Cancer-related biopsychosocial distress is highly prevalent across the cancer care continuum. The implementation of screening patients for biopsychosocial distress has become a standard of practice in cancer care. With the presence of COVID-19, clinical care has shifted from in-person care to virtual care in many instances. One of the realities of COVID-19 is the significant decrease in screening patients for biopsychosocial symptom burden. Methods Given that screening for distress has become an accreditation standard in many cancer programs, in the province of Alberta, Canada, all patients are screened for distress with every visit to the cancer centre. Given the presence of COVID-19, much of cancer care has shifted to being delivered virtually (through mediums such as Zoom). In this paper, we present pre- and post-COVID data on the frequency of distress screening and its impact on patient care. Results A review of pre- and post-COVID-19 screening for distress questionnaires revealed that patients who received virtual care were less satisfied in the areas of emotional support and received less resources and referrals to supportive care. Conclusion The rapid integration of virtual care without the inclusion of a standardized distress screening tool was akin to a natural experiment, as two groups (virtual and in-person clinic patients) received different levels of care and interventions. Without the inclusion of distress screening, the clinical conversation around symptoms is less likely to occur and results in fewer referrals to best practices in supportive care services. Lessons learned about virtual cancer care without distress screening in the time of COVID-19 demonstrates significantly fewer patients being screened for distress and subsequently has resulted in less supportive care referrals. Going forward, we must find ways to ensure that virtual cancer care continues to support distress screening and best patient-centric care.

Individuals with autism spectrum disorder (ASD) often benefit from allied health services such as occupational therapy, speech and language pathology, and applied behavioral analysis. While there is consistent evidence of disparities in access and use of medical services (e.g. dentistry), no such systematic review has examined disparities and differences in allied health use amongst children with ASD. In this systematic review, we examine disparities and differences in service access and use for children with ASD. Our findings suggest that children who are older, have less severe ASD symptoms, are from minority groups, and those from particular geographic regions are less likely to receive allied health services. Limitations and future directions are discussed.

AIM To investigate trends in birth prevalence of cerebral palsy (CP) overall and by gestational age, and examine the distribution of motor type, spastic topography, and severity using Australian CP Register data from 1995 to 2009. METHOD Prenatal and perinatal CP data were collated from state/territory CP registers. Birth prevalence estimates per 1000 live births and per 1000 neonatal survivors (NNS) were calculated in five epochs. Data from three state registers with population-level ascertainment were used to investigate birth prevalence trends by gestational age using Poisson regression. Distribution of motor type, spastic topography, and moderate to severe disability (IQ≤50 and/or Gross Motor Function Classification System levels III-V) were evaluated within birthweight categories. RESULTS Birth prevalence of CP varied across population-level states but within each state declined significantly over time (p

An increasing incidence of cancer has led to high patient volumes and time challenges in ambulatory oncology clinics. By knowing how many patients are experiencing complex care needs in advance, clinic scheduling and staff allocation adjustments could be made to provide patients with longer or shorter timeslots to address symptom complexity. In this study, we used predictive analytics to forecast the percentage of patients with high symptom complexity in one clinic population in a given time period. Autoregressive integrated moving average (ARIMA) modelling was utilized with patient-reported outcome (PRO) data and patient demographic information collected over 24 weeks. Eight additional weeks of symptom complexity data were collected and compared to assess the accuracy of the forecasting model. The predicted symptom complexity levels were compared with observation data and a mean absolute predicting error of 5.9% was determined, indicating the model’s satisfactory accuracy for forecasting symptom complexity levels among patients in this clinic population. By using a larger sample and additional predictors, this model could be applied to other clinics to allow for tailored scheduling and staff allocation based on symptom complexity forecasting and inform system level models of care to improve outcomes and provide higher quality patient care.

This audit aimed to increase understanding of the long-term outcomes of evidence-based medical and surgical interventions to improve gross motor function in children and adolescents with Cerebral Palsy.Retrospective audit of a birth cohort (2000-2009) attending a tertiary service in Western Australia.The cohort comprises 771 patients aged 8 to 17 years. Percentage of children receiving no Botulinum Toxin treatments in each Gross Motor Functional Classification System level was: I: 40%, II: 26%, III: 33%, IV: 28% and V: 46%. Of the total cohort, 53% of children received 4 or less Botulinum Toxin treatments and 3.7% received more than 20 treatments. Statistically significant difference in the rate of use of Botulinum Toxin pre and post-surgery (This audit documents medical intervention by age and Gross Motor Functional Classification System level in a large cohort of children with cerebral palsy over time and confirms stability of the level in the majority.IMPLICATIONS FOR REHABILITATIONThe information from this audit may be of use in discussions with families regarding the timing and use of Botulinum toxin and surgical intervention for motor function in children and adolescents with Cerebral Palsy.Long term use of Botulinum Toxin within an integrated evidence-based clinical program is not associated with loss of gross motor function in the long term as evidenced by the maintenance of Gross Motor Functional Classification System stability.

Background: The patient-reported outcomes (PROs) symptom complexity algorithm, derived from self-reported symptom scores using the Edmonton Symptom Assessment System and concerns indicated on the Canadian Problem Checklist, has not been validated extensively. Methods: This is a retrospective chart review study using data from the Alberta Cancer Registry and electronic medical records from Alberta Health Services. The sample includes patients with cancer who visited a cancer facility in Alberta, Canada, from February 2016 through November 2017 (n=1,466). Results: The effect size (d=1.2) indicates that the magnitude of difference in health status between the severe- and low-complexity groups is large. The symptom complexity algorithm effectively classified subgroups of patients with cancer with distinct health status. Using Karnofsky performance status, the algorithm shows a sensitivity of 70.3%, specificity of 84.1%, positive predictive value of 79.1%, negative predictive value of 76.7%, and accuracy of 77.7%. An area under the receiver operating characteristic of 0.824 was found for the complexity algorithm, which is generally regarded as good, This same finding was also regarded as superior to the alternative algorithm generated by 2-step cluster analysis (area under the curve, 0.721). Conclusions: The validity of the PRO-derived symptom complexity algorithm is established in this study. The algorithm demonstrated satisfactory accuracy against a clinician-driven complexity assessment and a strong correlation with the known group analysis. Furthermore, the algorithm showed a higher screening capacity compared with the algorithm generated from 2-step cluster analysis, reinforcing the importance of contextualization when classifying patients’ symptoms, rather than purely relying on statistical outcomes. The algorithm carries importance in clinical settings, acting as a symptom complexity flag, helping healthcare teams identify which patients may need more timely, targeted, and individualized patient symptom management.

BACKGROUND Although published studies report that screening for distress (SFD) improves the quality of care for patients with cancer, little is known about how SFD impacts healthcare professionals (HCPs). OBJECTIVES This quality improvement project examined the impact of implementing the SFD intervention on HCPs' confidence in addressing patient distress and awareness of person-centered care. PATIENTS AND METHODS This project involved pre-evaluation and post-evaluation of the impact of implementing SFD. A total of 254 HCPs (cohort 1) were recruited from 17 facilities across the province to complete questionnaires. SFD was then implemented at all cancer care facilities over a 10-month implementation period, after which 157 HCPs (cohort 2) completed post-implementation questionnaires. At regional and community care centers, navigators supported the integration of SFD into routine practice; therefore, the impact of navigators was examined. RESULTS HCPs in cohort 2 reported significantly greater confidence in managing patients' distress and greater awareness about person-centered care relative to HCPs in cohort 1. HCPs at regional and community sites reported greater awareness in person-centeredness before and after the intervention, and reported fewer negative impacts of SFD relative to HCPs at tertiary sites. Caring for single or multiple tumor types was an effect modifier, with effects observed only in the HCPs treating multiple tumors. CONCLUSIONS Implementation of SFD was beneficial for HCPs' confidence and awareness of person-centeredness. Factors comprising different models of care, such as having site-based navigators and caring for single or multiple tumors, influenced outcomes.

Aim To compare proportions of live births subsequently described as having cerebral palsy (CP), the distributions of associated impairments, and the causes of postneonatal CP between Aboriginal and Torres Strait Islander (Indigenous) and non-Indigenous populations in Australia. Method Data from statutory birth records and CP registers for the 1996 to 2005 birth cohort in Queensland, Western Australia, and the Northern Territory were stratified by Indigenous status and whether the CP was acquired pre/perinatally or postneonatally. Relative risks associated with Indigenous status were estimated and the distributions of causes of postneonatal CP compared. Results Indigenous births had a relative risk of 4.9 (95% confidence interval [CI] 3.0–7.9) for postneonatal CP but only of 1.42 (95% CI 1.2–1.7) for pre/perinatal CP. Almost half of postneonatal CP in Indigenous infants resulted from infection, whereas for non-Indigenous infants the most frequent cause was cerebrovascular accident. The impairments of Indigenous CP and of postneonatally acquired CP tended to be more numerous and more severe. Interpretation Indigenous children are at significantly greater risk of CP, particularly postneonatal CP. The predominant cause of postneonatal CP in non-Indigenous children has shifted to cerebrovascular accident over time; however, infections followed by head injury are still the most frequent causes in Indigenous infants.

This study examined sequential associations between pairs of caregiver talk and caregiver-child joint engagement categories. Sequential associations quantify the extent to which one event (such as a particular type of caregiver talk) follows another event (such as a particular type of joint engagement) in a pre-specified time window, while controlling for the chance occurrence of the sequence. Although unable to support strong conclusions about causality, the requirement of sequential analysis that key events occur within a close temporal sequence rules out alternative explanation for associations that summary-level correlations cannot. We applied sequential analysis to observational data on 98 caregiver-child dyads, fifty of which included a child with autism spectrum disorder (ASD). Groups were matched on mental age, and all were just beginning to develop spoken vocabulary. Sequential associations between supported joint engagement and caregiver follow-in utterances were stronger in ASD dyads as compared to dyads with typically developing children. Further, sequential associations between utterances related to the child's focus of attention followed by higher order supported joint engagement (HSJE) were stronger than between utterances that related to the caregiver's focus of attention and HSJE, across both groups. Finally, sequential associations between follow-in directives followed by HSJE were stronger than between follow-in comments followed by HSJE, again across both groups of children. Autism Res 2018, 11: 755-765. © 2018 International Society for Autism Research, Wiley Periodicals, Inc.Our findings suggest that caregivers of children with autism spectrum disorder (ASD) may be particularly adept at timing their talk to follow moments of high-level joint engagement, and that follow-in directives are particularly facilitative of high-level joint engagement. Future intervention work can capitalize on these findings to support high level caregiver-child engagement around toys, which may promote development in children with ASD.

Background Although a number of accreditation agencies and professional societies recommend routine screening for distress (SFD) for patients with cancer, it has been integrated very slowly into clinical practice. Objectives This evaluation investigated the impact of a large-scale SFD intervention on patients' quality of life, symptom reports, and psychosocial well-being. The SFD intervention involved (1) completion of the SFD tool by patients, (2) discussion between patient and provider about the concerns indicated, and (3) provision of appropriate assessments/interventions based on priority concerns. Patients and methods This quality improvement work included a pre-evaluation and postevaluation of the impact of implementation on patients' well-being. Patients in cohort 1 (N=740) were surveyed before implementation, whereas patients in cohort 2 (N=534) were surveyed 10 months after the implementation at 17 clinics province-wide. As part of the implementation, providers received training on assessing and responding to patient priority concerns with the standardized tool. Results No differences were seen in total score of quality of life between the cohorts. Fewer patients in cohort 2 than in cohort 1 reported health problems, including tiredness, drowsiness, poor appetite, nausea, anxiety, and poor well-being. Similarly, significantly fewer patients in cohort 2 endorsed problems relating to emotional, practical, informational, spiritual, social, and physical aspects of well-being. Conclusions Results showed significantly improved psychological and physical symptoms and psychosocial well-being after routine SFD was implemented, suggesting that a large-scale SFD intervention is beneficial for patients when it is integrated into existing clinical practice and community resources.

Various systems for rating secondary safety of particular makes and models of vehicles have been developed internationally. These measures generally evaluate crashworthiness (the ability of the vehicle to protect its own occupants in the event of a crash) separately from aggressivity (the harm a vehicle is liable to impose on other road users into which it crashes). This paper describes an approach using Australian and New Zealand data that combines these two facets of secondary safety into one 'Total Secondary Safety Index' estimated from real world crash outcomes. The Index estimates the risk of death or serious injury to all key road users in crashes involving light passenger vehicles across the full range of crash types. This paper describes the rationale and method for producing this Index, together with some estimates for common Australian and New Zealand makes and models of light passenger vehicles.

Cochlear implantation is now a well-established procedure for profoundly deaf children providing access to speech through hearing for many of them. Much attention has focused on which communication mode to adopt with this group of children but very little work has looked at the choices that parents make before and after cochlear implantation. This study, following on from two earlier studies, looked in depth at the experiences of 12 families. It finds that parents choose the most effective way of communicating with their child but retain as their goal, the development of oral communication skills. For many this is a journey in which different approaches are utilised at various stages in the child's development.

In a case-control study of all cerebral palsy cases with moderate and severe spastic quadriplegia born between 1976 and 1985, males comprised three-quarters of the cases and tended to have more severe motor impairment than females. The majority of cases had multiple and severe disabilities, and 27 per cent had died by the time of data collection. There was an excess of low-birthweight and preterm births compared with all live births in WA. An intrapartum cause was considered possible in 18 of the 74 children; however, half of these had evidence of compromise before labour.

Aim To describe cerebral palsy (CP) surveillance programmes and identify similarities and differences in governance and funding, aims and scope, definition, inclusion/exclusion criteria, ascertainment and data collection, to enhance the potential for research collaboration. Method Representatives from 38 CP surveillance programmes were invited to participate in an online survey and submit their data collection forms. Descriptive statistics were used to summarize information submitted. Results Twenty-seven surveillance programmes participated (25 functioning registers, two closed owing to lack of funding). Their aims spanned five domains: resource for CP research, surveillance, aetiology/prevention, service planning, and information provision (in descending order of frequency). Published definitions guided decision making for the definition of CP and case eligibility for most programmes. Consent, case identification, and data collection methods varied widely. Ten key data items were collected by all programmes and a further seven by at least 80% of programmes. All programmes reported an interest in research collaboration. Interpretation Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collected. These findings will facilitate harmonization of data and collaborative research efforts, which are so necessary on account of the heterogeneity and relatively low prevalence of CP.

We sent questionnaires to families of all 288 children who had received cochlear implants at one center in the United Kingdom at least 5 years previously. Thus, it was a large, unselected group. We received 142 replies and 119 indicated that the child and family had changed their communication approach following cochlear implantation. In 113 cases the change was toward spoken language and in 6 cases the change was toward signed communication. Parents were asked to respond to statements about communication with their deaf child, and their responses indicated that parents wanted the most effective means of communication and one that their child would find most useful in the future. Findings that emerged from parents' comments indicated that the change toward greater use of spoken language was child-led and driven by increased audition. Parents also valued the contribution of signed communication.

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. Results The overall birth prevalence of CP (including those whose CP was postneonatally acquired) for the 1993 to 2006 birth cohort was 2.1 per 1000 live births (95% confidence interval [CI] 2.0–2.2). Excluding cases with a known postneonatal cause, the birth prevalence for pre/perinatally acquired CP was 2.0 per 1000 live births (95% CI 1.9–2.1). A downward trend in rates of CP in those born extremely preterm was evident over at least three consecutive periods across all three regions. Most (58.6%) children were born at term (≥37wks). Male sex, early gestational age, low birthweight, and multiple birth were risk factors for CP. Interpretation Overall rates of CP did not change during this period. The proportion of those with CP born extremely preterm decreased. The ACPR Group will investigate whether this pattern continues when data pertaining to the next birth cohort for all three regions becomes available.

Aim Pregnancy-induced hypertension/pre-eclampsia (PIH/PE) is associated with cerebral palsy (CP) in term births but if sufficiently severe to necessitate preterm delivery predicts a lower risk of CP than observed in gestational peers. We investigated whether this apparent ‘protection’ was attributable to inappropriately chosen comparison groups and/or an increased risk of perinatal death. Method Perinatal information was collected from medical records of children with CP, individually matched neonatal survivors without CP, and representative samples of perinatal deaths of Western Australian birth cohorts from 1980 to 1995. Compared with these data, the sensitivity of statutorily collected PIH/PE data was assessed for each outcome group. Using these sensitivities, the estimated risks of death and CP in births to all women with and without PIH/PE were compared. Results Sensitivity of statutory PIH/PE data decreased with increasingly poor outcome. Reconstructed cohorts showed that PIH/PE increased the risks both of CP and of perinatal death in births at lower gestations except in births

Hospices have regulatory requirements to provide volunteers who can assist families in a variety of ways. Hospices also typically provide large amounts of uncompensated education for students in various life sciences as part of their mission to promote quality care for those at the end-of-life. Separately, there is evidence of the educational benefits of exposing medical students to hospice patients and practices. But little has been published about the costs or benefits such teaching programs incur at the hospices involved. Hospice of Central New York developed a service-learning elective where first-year medical students were trained as volunteers. Despite initial concerns that significant staff time would be required to develop and maintain this elective, it appears to be an efficient way to satisfy the need for volunteers while contributing to the education of the involved students.

Cerebral palsy (CP) can occur in term infants with or without preceding newborn encephalopathy. We compared the type and severity of CP and associated disability in these two groups. Participants from a population-based case-control study of term newborn encephalopathy were followed up for 6 years and linked to the Western Australian Cerebral Palsy Register. The remaining term infants with CP for the same period were also identified from the Cerebral Palsy Register. 13% of neonatal survivors of term newborn encephalopathy had CP, a rate of 116 per 1000 term live births. Overall, 24% of term infants with CP followed newborn encephalopathy. CP following newborn encephalopathy was more likely to: affect males (72% vs 56%); be severe (47% vs 25%); and be of spastic quadriplegia or dyskinetic types. Cognitive impairment was more common (75% vs 43%) and severe (41% vs 16%), as was epilepsy (53% vs 29%) in survivors of encephalopathy. These children were also more likely to: be non-verbal (47% vs 22%); have a severe composite disability score (47% vs 26%); and die between time of diagnosis of CP and age 6 years (5-year cumulative mortality 19% vs 5%). Children born at term who develop CP following newborn encephalopathy have a poorer prognosis than those with CP who were not encephalopathic in the first week of life.

Previous research has shown that, on average, children with low vision lag their sighted peers in general reading development (in terms of speed, accuracy and comprehension). This study sought to examine this apparent lag by comparing the reading profiles of 25 normally sighted readers (mean age 8 years 8 months) with 25 low vision readers. The children were tested using a reading test (the Neale Analysis of Reading Ability, NARA) and were matched on the reading accuracy score produced by the test. Therefore in terms of the reading accuracy scores (and reading ages) derived from the NARA both groups were the same. The low vision readers were on average older than the normally sighted children (mean = 10 years, 5 months). When the reading profile (i.e. accuracy, comprehension and speed) was examined in the same analysis no significant effect was revealed [d.f. = 1, 48; F = 0.05; p > 0.1], but a general lag for these children is suggested (in keeping with previous research). However, a closer analysis of the reading error profile revealed the most common reading errors made by all readers in the analysis were either mispronunciations or substitutions. The low vision readers were more prone to making substitution errors than mispronunciations and the reverse was true for normally sighted readers [d.f. = 1, 48; F = 7.1; p < 0.05]. This indicates that the reading strategies adopted by low vision readers may differ from those of normally sighted readers of the same apparent reading ability.

As part of a patient-based case-control study of newborn encephalopathy, we examine the cranial ultrasound results of 212 patients to determine the validity of ultrasound in predicting an adverse outcome. Forty-six (22%) patients died or developed cerebral palsy (adverse outcome) by 2 years of age. On the basis of clinical decision, 125 (60%) patients had an ultrasound before 72 hours of age; of these, 29% had an adverse outcome. The resistive index is the primary measure of interest, with a value of 0.55 or less considered abnormal. Infants with an abnormal resistive index are 8.8 times (P < 0.001) more likely to have an adverse outcome than those with a normal result. The positive predictive value of an abnormal resistive index was 71%. The results are similar for the subgroup with intrapartum hypoxia and the subgroup that had ultrasound performed before 24 hours of age. It is clear that resistive index results cannot be used in isolation, although they may have a place, in combination with other factors, in the counseling of parents and, cautiously, in the clinical management of patients.

This is a brief background paper for a supplementary issue of Developmental MedicineChild Neurology by the Australian Cerebral Palsy Register Group. It provides context for the reader of the supplement including a description of the establishment and development of state and territory cerebral palsy registers in Australia.

The Western Australian Birth Defects Registry and the Western Australian Cerebral Palsy Register used multiple sources of voluntary notification without consent and have a high level of case ascertainment, but there were concerns over privacy and a call for statutory notification.To seek consumer consensus on whether notification to the registers should be statutory or only with consent.Two facilitated workshops for consumer and community members of groups representing people with birth defects, cerebral palsy and disability, and the Western Australian Health Consumers' Council.Parent groups and the Health Consumers' Council were unanimous in their support for statutory notification, with 3 conditions: that comprehensive and open information be provided to consumer groups and community; that consumers have input into the development of statutory notification; and that an opt-out clause be included. A Consumer Reference Group was established. They decided on a name for the new register (Western Australian Register of Developmental Anomalies), developed an opt-out clause and reviewed drafts of the regulations for statutory notification. The regulations came into effect in January 2011.Consumers were key to achieving statutory notification. We encourage others to engage with their consumers and community in equal partnership for mutual benefit.

The aim of this study was to investigate the association between heavy maternal alcohol consumption and pre- peri- and postneonatally acquired cerebral palsy (CP).The records of all mothers with an International Classification of Diseases, revision 9 or 10 (ICD-9/-10) alcohol-related diagnostic code, indicating heavy alcohol consumption, recorded on population-based health, mental health, and drug and alcohol data sets from 1983 to 2007, and their children were identified through the Western Australian Data-linkage System. This 'exposed' cohort was frequency matched with mothers without an alcohol-related diagnosis and their offspring (comparison group). Cases of CP were identified through linkage with the Western Australia CP Register. Analyses were undertaken using multivariate logistic regression.There were 23 573 live births in the exposed group (58.6% non-Aboriginal; 41.4% Aboriginal) and 292 cases of CP. The odds of pre/perinatally acquired CP were elevated for children of non-Aboriginal mothers with an alcohol-related diagnosis recorded during pregnancy (adjusted odds ratio 3.32; 95% confidence interval [CI] 1.30-8.48) and for Aboriginal children when an alcohol-related diagnosis was recorded up to 12 months before the mother's pregnancy (adjusted odds ratio 2.49; 95% CI 0.99-6.25). Increased odds of postneonatally acquired CP following any alcohol-related diagnosis were found for non-Aboriginal children (adjusted odds ratio 7.92; 95% CI 2.23-28.14).These results suggest that heavy maternal alcohol consumption is a direct cause of pre/perinatally acquired CP, and an indirect cause of postneonatally acquired CP, in non-Aboriginal children. The lack of an association for Aboriginal children requires further investigation but may be due to under ascertainment of alcohol use disorders during pregnancy and other aetiological pathways.

It is known that spoken language development is aided by cochlear implantation, but is not known what other factors contribute to this. This three-part study examined what parents, carers, and teachers thought contributed to a change in communication from sign to speech. Part One was a retrospective examination of data at the Nottingham Paediatric Cochlear Implant Programme. Part Two was based on a questionnaire which was sent to the parents of this group of children on the Nottingham Paediatric cochlear implant programme. Part Three used interviews with twelve families selected randomly from this group.

Purpose Standard skin care instructions regarding the use of antiperspirants during radiotherapy to the breast varies across North America. Women have articulated that when instructed to not use antiperspirant, the potential for body odor is distressing. Historical practices and individual opinions have often guided practice in this field. The present study had 2 purposes. To evaluate whether the use of aluminum-based antiperspirant while receiving external beam radiotherapy for stage 0, I, or II breast cancer will increase axilla skin toxicity and to evaluate whether the use of antiperspirant during external beam radiotherapy improves quality of life. Methods A total of 198 participants were randomized to either the experimental group (antiperspirant) or control group (standard care-wash only). The skin reactions in both groups were measured weekly and 2 weeks after treatment using the National Cancer Institute Common Toxicity Criteria Adverse Events, version 3, toxicity grading criteria. Both groups completed the Functional Assessment for Chronic Illness Therapy's questionnaire for the breast population quality of life assessment tool, with additional questions evaluating the effect of underarm antiperspirant use on quality of life before treatment, immediately after treatment, and 2 weeks after treatment during the study. Results The skin reaction data were analyzed using the generalized estimating equation. No statistically significant difference was seen in the skin reaction between the 2 groups over time. The quality of life data also revealed no statistically significant difference between the 2 groups over time. Conclusions Data analysis indicates that using antiperspirant routinely during external beam radiotherapy for Stage 0, I, or II breast cancer does not affect the intensity of the skin reaction or the self-reported quality of life. This evidence supports that in this particular population, there is no purpose to restrict these women from using antiperspirants during their treatment, and the decision to use an antiperspirant or not in this setting should be left to the discretion of the patient.

Previous studies have proposed a link between the presence of specific single nucleotide polymorphisms (SNPs) and cerebral palsy and the majority of these associations remain to be confirmed or rejected by prospective studies with sufficient statistical power. Prior studies have also given little attention to the interaction of genomic characteristics and clinical risk factors.This paper describes the design of a prospective case-control study to test these genetic associations in conjunction with more stringent data collection in respect to clinical features associated with pregnancy, particularly maternal infection. Here we consider the ethical requirements, our hypothesis that genetic susceptibility modifies the risk of cerebral palsy in the presence of perinatal environmental triggers, a priori primary and secondary aims, power calculations, participant recruitment strategies, data linkage, sampling methods of genetic material and subsequent SNP analysis, collection of clinical data and the proposed final statistical analysis.

Twelve parents of young deaf children were recorded sharing books with their deaf child—six from families using British Sign Language (BSL) and six from families using spoken English. Although all families were engaged in sharing books with their deaf child and concerned to promote literacy development, they approached the task differently and had different expectations in terms of outcome. The sign bilingual families concentrated on using the book to promote BSL development, engaging in discussion around the book but without referring to the text, whereas the spoken language families were focused on features of the text and less inclined to use the book to promote wider knowledge. Implications for early intervention and support are drawn from the data. This paper presents the findings of a study into deaf children’s early experiences of literacy at home. The study was a qualitative investigation into early literacy practices of families with deaf children that draws on research that does not take a deficit stance toward deaf children’s literacy but considers its positive features within a developmental paradigm. Our use of the term ‘‘deaf ’’ in this context includes children with moderate to profound hearing loss. The project considers two groups of deaf children, those from sign bilingual homes and those from spoken English homes. The possibility that literacy development for the two groups of deaf children is likely to follow different routes is fundamental to this study because it is likely that different strategies will prove to be facilitative for each group. This has implications for parents and teachers of the deaf 1 interacting with these young deaf children. The study was driven by the continued search for an understanding of how deaf children learn to read and what factors influence their success. In general, deaf children’s standards of literacy remain low, and it is the area of education in which they most significantly underachieve (Luckner, Sebald, Cooney, Young, & Muir, 2005; Powers, Gregory, &

The term cerebral palsy refers to a range of clinical symptoms, with related service requirements, resulting from lesions or abnormalities in the brain arising early in life. It is not a diagnosis; aetiology and pathology are variable. This article discusses the definition and differential classification of cerebral palsy, describes trends in its frequency over time stratified by associated variables, and briefly reviews the most recent findings concerning its aetiology.

Neutrophils are known to mediate injury in acute ischemic stroke especially during reperfusion. Migration of neutrophils into regions of ischemic injury involves binding to the endothelial cell's intercellular adhesion molecule (ICAM-1) through the leukocyte integrin, CD11/CD18. We studied the potential for neuroprotection with a humanized antibody that binds to and blocks the functions of the CD11/CD18 integrin in a rabbit model of transient focal ischemia. Fifteen New Zealand White rabbits underwent transorbital occlusion of the left middle cerebral, anterior cerebral, and internal carotid arteries using aneurysm clips for 2 h, followed by 6 h of reperfusion. Treatment with a maximally saturating dose (4 mg/kg) of a humanized CD11/CD18 monoclonal antibody (Hu23F2G, ICOS Corp., Bothell, WA) (n = 8) or placebo (n = 7) was administered 20 min after occlusion and given as a single intravenous bolus. Hemispheric ischemic neuronal damage (IND) as seen on hematoxylin- and eosin-stained sections was significantly reduced in Hu23F2G-treated animals by 57% (Hu23F2G: 15 +/- 6.9%; placebo: 35 +/- 5%; mean +/- SEM, P < 0.05, t-test). Immunohistochemical staining with neutrophil elastase confirmed the presence of neutrophils within regions of IND in control brains. Treatment with Hu23F2G resulted in marked reduction of neutrophil infiltration. (No. of neutrophils/IND area: Hu23F2G 36.1 +/- 36.7 cm-2, placebo 460.6 +/- 101.8 cm-2, P = 0.001. ) Antagonism of neutrophil migration at the level of the CD11/CD18 integrin reduces ischemic injury in experimental stroke.

OBJECTIVES--To examine the rate of cerebral palsy in twins and triplets in births from 1980 to 1989 in Western Australia and to identify factors associated with increase in risk. DESIGN--Pluralities for all births in Western Australia were identified through the standardised midwives' notification system, and cases of cerebral palsy were identified from the Western Australian cerebral palsy register. MAIN OUTCOME MEASURES--Multiple births, cerebral palsy, excluding postneonatal cause. RESULTS--The prevalence of cerebral palsy in triplets, of 28 per 1000 survivors to 1 year (95% confidence interval 11 to 63) exceeded that in twins (7.3; 5.2 to 10) and singletons (1.6; 1.4 to 1.8). Although twins and triples were more likely than singletons to be low in birth weight, their risks of cerebral palsy if low in birth weight were similar. In contrast, in normal birthweight categories twins had a higher rate of cerebral palsy (4.2; 2.2 to 7.7) than singletons (1.1; 1.0 to 1.3). The prevalence of cerebral palsy was similar in twins of unlike sex pairs, all of whom are dizygotic, and in like sex pairs. A twin pair in which one member died in utero was at higher risk of cerebral palsy: 96 per 1000 twin pairs (36 to 218) compared with 12 (8.2 to 17) for twin pregnancies in which both survived. There was a similar but non-significant trend for death of one triplet to be associated with increased risk of cerebral palsy in the survivors of the set. CONCLUSION--Triplet pregnancies produced a child with cerebral palsy 47 times more often than singleton pregnancies did and twin pregnancies eight times more often. Eighty six per cent of cerebral palsy in multiple births was in twins. As multiple births are increasing mainly because of personal and medical decisions the increased risk of cerebral palsy in multiple births is of concern.

OBJECTIVE--To analyse the trends in stillbirths, neonatal deaths, and cerebral palsy in all infants born in Western Australia from 1967 to 1985. To relate these trends to changes in perinatal care, particularly in relation to avoidance of intrapartum asphyxia in term infants and the increased survival of low birthweight infants. DESIGN--Descriptive epidemiological study calculating population rates for perinatal deaths and cerebral palsy according to year of birth and birth weight. SETTING--Western Australia. SUBJECTS--All infants born after 20 weeks' gestation or weighing at least 400 g (live and stillborn). MAIN OUTCOME MEASURES--Stillbirths, neonatal deaths (from perinatal death certificates), and cerebral palsy (from a population based register). RESULTS--Overall stillbirth rates fell from 12.1/1000 total births in 1967-70 to 8.1 in 1983-5. Early neonatal mortality fell from 13.0/1000 live births to 4.4 over the same period whereas total cerebral palsy rates remained at around 2-2.5/1000 live births. Death rates fell in all birth weight categories, particularly in low birthweight infants between 1975 and 1985, the period when birthweight data were available. In contrast, cerebral palsy rates in infants under 1500 g rose significantly over this period (from 12.1 in 1968 to 64.9 in 1985). The rise was seen in all spastic categories, including severely and multiply handicapped children. CONCLUSIONS--Large increases in the use of interventions aimed at reducing birth asphyxia and handicaps had not (by 1985) resulted in lower rates of cerebral palsy. This suggests that birth asphyxia is not a major cause. The increased survival of low birthweight infants has resulted in more cerebral palsy in this group, due either to postnatal complications of immaturity or prenatal damage to the fetal brain. These findings have implications for planning perinatal care and for litigation for putative obstetric malpractice in cerebral palsy cases.

EDITOR,—We have previously reported twinning and triplet rates to 1989 in a study of cerebral palsy in multiple births in Western Australia.1 The steep rise in triplet pregnancies was particularly worrying because, although actual numbers were small, the risk of having a child with cerebral palsy was 47 times greater in a triplet than a singleton pregnancy. The main contributor to the widely reported rise in multiple births during the 1980s is thought to have been the increasing use of fertility treatments.2 We continued to monitor …

This report describes trends, predictors, and causes of mortality in persons with cerebral palsy (CP) using individuals identified by the Western Australian Cerebral Palsy Register and born between 1958 and 1994. Two thousand and fourteen people were identified (1154 males, 860 females), of whom 225 had died by 1 June 1997. Using date-of-death data, crude and standardized mortality rates were estimated and predictors of mortality sought using survival analysis stratified by decade of birth, description of impairments, and demographic and perinatal variables. For those born after 1967, the cause of death profile was examined over time. Mortality exceeded 1% per annum in the first 5 years and declined to age 15 years after which it remained steady at about 0.35% for the next 20 years. The strongest single predictor was intellectual disability, but all forms of disability contributed to decreased life expectancy. Half of those with IQ/DQ score

Data were analyzed from all cases of cerebral palsy in a population-based register in Western Australia. The number of cases of cerebral palsy diagnosed by age 5 years varied little among cohons of infants born between 1960 and 1982. Trends toward more intensive perinatal care, increasing frequency of cesarean section, and the increased use of electronic fetal monitoring to detect fetal distress were associated with decreases in perinatal mortality but not in cerebral palsy. The increase in survival of low birth weight infants has resulted in an increased number of children with cerebral palsy, but this has had a minimal impact on total cerebral palsy rates. These descriptive trends raise doubts about the relationship between cerebral palsy and perinatal events, the effects of obstetric and neonatal interventions in reducing cerebral palsy, and the use of cerebral palsy data as an index of perinatal care practices.

A novel enzyme-linked immunoassay employing a partitioning chromophore was developed. The assay system consisted of an aqueous phase and an immiscible organic solvent. Antigen-antibody interaction was indicated by transfer of a chromogenic indicator from the aqueous phase to an organic layer. The indicator employed was a water-soluble phosphate ester of phenylazophenol. Hydrolysis of the ester by acid or alkaline phosphatase produced a water-insoluble phenol that partitioned into toluene. The enzyme employed in this assay format can be covalently linked to antibody or a specific antibody for the phosphatase can be used. Phase change immunoassays were developed for the measurement of alkaline phosphatase, human IgG in whole blood, and the human tumor marker prostatic acid phosphatase. Solid supports of small polystyrene latex particles and Sephadex were employed.