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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.

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

This paper reviews and synthesizes research into the ways in which parents support their child across three major developmental domains in early childhood: early language, play and early literacy. We show how these domains are linked to each other and suggest that there is some evidence that interventions in all of them will promote mutual development. Early interventions that focus on parent–child interactive experiences that are both routine and ‘exotic’ in nature are likely to be more powerful than practitioner-dominated interventions.

Security officers are affected by the use of force rules and regulations when they swear to protect and serve an organization. When security officers are hired to work in security they must learn the organization's use of force continuum, policies, and procedures of their security department before they can begin work.

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.

In 2012, the provincial cancer agency in Alberta initiated a provincial quality improvement (QI) project to develop, implement, and evaluate a provincial Cancer Patient Navigation (CPN) program spanning 15 sites across over 600,000 square kilometres. This project was selected for two years of funding (April 2012–March 2014) by the Alberta Cancer Foundation (ACF) through an Enhanced Care Grant process (ACF, 2015). A series of articles has been created to capture the essence of this quality improvement (QI) project, the processes that were undertaken, the standards developed, the education framework that guided the orientation of new navigator staff, and the outcomes that were measured. The first article in this series focused on establishing the knowledge base that guided the development of this provincial navigation program and described the methodology undertaken to implement the program across 15 rural and isolated urban cancer care delivery sites. The second article delved into the education framework that was developed to guide the competency development and orientation process for the registered nurses who were hired into cancer patient navigator roles and how this framework evolved to support navigators from novices to experts. This third and final article explores the evaluation approach used and outcomes achieved through this QI project, culminating with a discussion section, which highlights key learnings, and subsequent steps that have been taken to broaden the scope and impact of the provincial navigation program.

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.

Date Presented 04/13/21 Sensory processing challenges are measured by caregiver report and clinician observation and affect many people with autism spectrum disorder and their caregivers. It is unclear how caregiver stress influences the correlation between scores on caregiver report and observational measures. The present analysis explores correlations between two formats of tools to assess sensory processing and indicates that caregiver stress moderates the association between sensory-seeking scores on the measures. Primary Author and Speaker: Emily Campi Additional Authors and Speakers: Abdullah S. Alsaeed, Kecia Doyle, Shanda N. Geil, and Kristen A. Pickett Contributing Authors: Noah T. Herzog

e13529 Background: Increasing cancer incidence, coupled with a trend in treating patients for longer periods of time, presents challenges in addressing all patients’ symptoms/concerns within the allotted time for ambulatory clinic appointments. Consequently, the ability to forecast and monitor the percentage of cancer patients with different symptom complexity levels is extremely valuable. Symptom complexity is a summary score that weighs the severity of all patient reported symptom scores at one time point. If a clinic could predict how many patients may need more time due to complex symptom management needs, clinic-scheduling templates could be adjusted to include a set number of longer appointments. Methods: Auto Regressive Integrated Moving Average (ARIMA) models were utilized to forecast the percentage of patients with a high symptom complexity level within one cancer clinic in Alberta, Canada. Goodness-of-fit measures such as Bayesian information criterion (BIC) and Ljung-Box test were used to determine optimal form for the ARIMA model. Following model selection, the autocorrelation function (ACF) was performed. These tests together verified that chosen AR, MA and differencing (I) were appropriate. Model performance on the historical data for model fit was summarized by Mean Absolute Error (MAE) and Root Squared Mean Error (RSME). Forecasting accuracy was assessed using mean absolute prediction error by comparing the forecasts with actual clinic data. Results: Of the multiple model structures tested, ARIMA (0, 0, 1) was selected, with the lowest BIC and non-significant Ljung-Box test. We obtained forecasts of the percentage of patients with high symptom complexity levels, with an MAE at 4.0%. To assess forecast accuracy, we calculated the absolute prediction error by comparing the forecasted percentages of patients with high symptom complexity levels to actual clinic visit data and the mean absolute prediction error was 5.9%. Conclusions: This forecasting model has important implications, allowing clinics to adjust scheduling templates to provide a select number of longer timeslots and therefore, be better prepared to meet the symptom management needs of cancer patients who are considered highly complex. This model could be applied to other clinical populations to allow for a tailored scheduling approach based on each clinic’s symptom complexity forecasting.

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.

En 2012, l’agence provinciale du cancer de l’Alberta lançait un projet d’amélioration de la qualité dans le but de créer, de mettre en œuvre et d’évaluer un programme provincial de navigation pour patients cancéreux englobant 15 établissements répartis sur plus de 600 000 kilomètres carrés. Ce projet a été sélectionné pour recevoir un financement de deux ans (d’avril 2012 à mars 2014) de l’Alberta Cancer Foundation (ACF), accordé à la suite d’un processus de subvention pour améliorer les soins (Enhanced Care Grant). Une série d’articles a été rédigée pour capturer l’essence de ce projet d’amélioration de la qualité des processus amorcés, des normes élaborées, du cadre éducatif déterminant l’orientation du nouveau personnel navigateur et des résultats mesurés. Le premier article de la série portait sur la base de connaissances ayant guidé l’élaboration du programme provincial de navigation et sur la méthodologie employée pour mettre le programme en œuvre dans 15 centres de soins du cancer situés en milieu rural ou en milieu urbain isolé (Anderson et al., 2016). Le présent article, deuxième de la série, approfondit le cadre éducatif conçu pour guider l’acquisition des compétences et le processus d’orientation des infirmières (et infirmiers) autorisées engagées pour remplir le rôle d’intervenant pivot auprès des patients cancéreux. Il expose également comment le cadre a évolué pour aider à ce que les navigateurs passent du statut de novice à celui d’expert. Le troisième et dernier article explorera les résultats obtenus grâce à ce projet d’amélioration de la qualité et se terminera par une section de discussion mettant en lumière les principales leçons retenues, les mesures d’adaptation mises en place, ainsi que les prochaines étapes en cours pour étendre la portée et les effets du programme provincial de navigation.

In 2012, the provincial cancer agency in Alberta initiated a provincial quality improvement project to develop, implement, and evaluate a provincial cancer navigation program spanning 15 sites across more than 600,000 square kilometres. This project was selected for two years of funding (April 2012–March 2014) by the Alberta Cancer Foundation (ACF) through an Enhanced Care Grant process (ACF, 2015). A series of articles has been created to capture the essence of this quality improvement (QI) project, the processes that were undertaken, the standards developed, the education framework that guided the orientation of new navigator staff, and the outcomes that were measured. The first article in this series focused on establishing the knowledge base that guided the development of this provincial navigation program and described the methodology undertaken to implement the program across 15 rural and isolated urban cancer care delivery sites (Anderson et al., 2016). This article, the second in the series, delves into the education framework that was developed to guide the competency development and orientation process for the registered nurses who were hired into cancer patient navigator roles and how this framework has evolved to support navigators, as they move from novice to expert practice. The third and final article will explore the outcomes that were achieved through this quality improvement project culminating with a discussion section highlighting key learnings, adaptations made, and next steps underway to broaden the scope and impact of the provincial navigation program.

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. Preterm birth affects approximately 500,000 babies a year in the United States. One out of nine babies born in the United States deliver before 37 weeks gestation. Preterm birth can cause lifelong neurological problems, cerebral palsy, vision and hearing impairments, and developmental delay. The estimated $26 billion a year in preterm birth related costs are staggering to the health care system. Preterm-related causes of death in 2008 together accounted for 35% of all infant deaths. Methods. This paper is a review of the literature published (2006-2012) on the relationship between neighborhood environment and preterm birth. Results. Neighborhood deprivation and the neighborhood environment were associated with low-birth weight and preterm birth. Examples of neighborhood deprivation include economic deprivation, social disorder, and lack of health resources. Neighborhood environment can be described as neighborhood physical deterioration, violent crime, and group density. Conclusions. A significant association exists between the neighborhood environment and birth outcomes. More research is needed to explore interventions with a systems approach to promote healthy maternal behavior, reduce stress, and improve care for expecting mothers living in stressful neighborhood environments in order to reduce preterm births. KS J Med 2014; 7(3):77-87.

This study investigated the relationships between children’s home literacy environments and their early hypotheses about printed words in the year prior to entering school. There were 147 children (70 girls and 77 boys: mean age 57 months, range = 47–66 months, standard deviation = 4.5 months) in the study. Results showed that the children had varying degrees of knowledge about printed words. Significant associations between age of the child and the application of hypotheses about printed words were found. In relation to the home literacy environments, parents with stronger literacy profiles and habits, whether to do with traditional forms of print or new techno-literacies, were more likely to read to their children on a daily basis, and these children were more likely to have developed hypotheses about the structure of printed words. The implications for understanding children’s early literacy knowledge and relevance for educators of young children are discussed.

En 2012, l’agence provinciale du cancer de l’Alberta lançait un projet d’amélioration de la qualité dans le but de créer, de mettre en oeuvre et d’évaluer un programme provincial de navigation pour patients cancéreux englobant 15 établissements répartis sur plus de 600 000 kilomètres carrés. Ce projet a été sélectionné pour recevoir un financement de deux ans (d’avril 2012 à mars 2014) de l’Alberta Cancer Foundation (ACF) accordé à la suite d’un processus de subvention pour améliorer les soins (Enhanced Care Grant). Une série d’articles a été rédigée pour capturer l’essence de ce projet d’amélioration de la qualité des processus amorcés, des normes élaborées, du cadre éducatif déterminant l’orientation du nouveau personnel navigateur et des résultats mesurés. Le premier article de la série portait sur la base de connaissances ayant guidé l’élaboration du programme provincial de navigation et sur la méthodologie employée pour mettre le programme en oeuvre dans 15 centres de soins du cancer situés en région rurale ou en milieu urbain isolé (Anderson et al., 2016). Le deuxième article a approfondi le cadre éducatif conçu pour guider l’acquisition des compétences et le processus d’orientation des infirmières (et infirmiers) autorisées engagées pour remplir le rôle d’intervenant pivot auprès des patients cancéreux. Il a également exposé comment le cadre a évolué pour aider à ce que les navigateurs passent du statut de novice à celui d’expert. Le présent article, troisième et dernier de la série, explore les résultats obtenus grâce à ce projet d’amélioration de la qualité et se terminera par une section de discussion mettant en lumière les principales leçons retenues, les mesures d’adaptation mises en place, ainsi que les prochaines étapes en cours pour étendre la portée et les effets du programme provincial de navigation.

This study investigated the home literacy environments (HLEs) of 4-year-old children attending an early childhood program prior to school entry and the association between the HLE and children's interests in and attitudes to literacy. One hundred and thirty-eight parents and 140 children participated in the study. Parents completed a questionnaire and children were interviewed. Results showed that, generally, these parents created “somewhat rich” literacy environments, and that traditional literacy (as opposed to techno-literacy) materials predominated. Frequency of the parents' own reading was positively associated with the frequency with which parents read to their children. Richness of parents' reading habits was positively associated with the frequency with which parents read to their children, but not necessarily associated with the children's own interests in or orientation to literacy.

Aim The aim of this study was to investigate the association between heavy maternal alcohol consumption and pre- peri- and postneonatally acquired cerebral palsy (CP). Method 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. Results 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). Interpretation 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.

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.

This section of the Problem Solvers department discusses the classroom results of using problems presented in previous issues of Teaching Children Mathematics.

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.

The hepatobiliary disposition of thyroxine (T4) was evaluated in Groningen Yellow transport deficient (TR(-)) rats lacking functional multidrug resistance-associated protein 2 (Mrp2; Abcc2). Male Wistar and TR(-) rats were dosed orally (4 days) with phenobarbital (PB; 100 mg/kg) or DMP 904 (200 mg/kg), after which T4 homeostasis and hepatic cytochromes P450, UDP-glucuronosyltransferase, xenobiotic transporters, and T4 glucuronidation were determined. Serum concentrations of T4 were approximately 50% higher in control TR(-) rats than Wistars. PB and DMP 904 increased hepatic levels of P450s and T4-glucuronidation (T4-G), and these changes were associated with decreased serum T4 levels in both strains. In Wistar but not TR(-) rats, DMP 904 increased thyroid stimulating hormone levels twofold. Hepatobiliary clearance of T4 was determined after intravenous infusion of [(125)I]T4 to rats dosed with PB and DMP 904 (4 days). PB and DMP 904 increased plasma clearance and hepatic uptake of [(125)I]T4 equivalents in Wistar but not TR(-) rats. Total biliary clearance (Cl(bile)) was approximately 0.85 and 0.2 ml/h in Wistar and TR(-) rats, respectively, with virtually no T4-G excreted in bile in TR(-) rats. Biliary clearance of unconjugated T4 was also lower in control TR(-) rats than in Wistars, although DMP 904 increased its biliary clearance in both strains. These results suggest that Mrp2 is likely to be responsible for biliary excretion of T4-G and contributes in part to excretion of T4. Decreased biliary clearance of T4 and metabolites in TR(-) rats mitigated but did not prevent drug-induced changes in serum T4, suggesting that other factors contribute to changes in T4 homeostasis in these rats.

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.

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.

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.

The study of deaf children’s early literacy raises fundamental issues about their access to language, experiences of early interaction and literacy development. However, we currently understand very little about how young deaf children develop literacy skills given their exceptional linguistic circumstances. This review explores early literacy practices in the homes of young deaf children to identify the commonalities and differences apparent in spoken language and sign bilingual homes. The introduction of the Newborn Hearing Screening Programme (NHSP), which is currently taking place, aims to diagnose congenital deafness in the first few weeks of life, followed by immediate involvement of a team of professionals with the child and family, including a teacher of the deaf. This provides a unique opportunity to explore early literacy practices in homes, and identify ways in which teachers and parents/carers can work collaboratively to facilitate deaf children’s early literacy development.

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.