An observational study of parental language during play and mealtime in toddlers at variable likelihood for autism.

Parental language input influences child language outcomes but may vary based on certain characteristics. This research examined how parental language differs during two contexts for toddlers at varying likelihood of autism based on their developmental skills. Parental language (quantity, quality, and pragmatic functions) was analyzed during dyadic play and mealtime interactions as a secondary data analysis of observational data from a study of toddlers at elevated and lower likelihood of autism. Child developmental skills and sensory processing were also assessed. Parents used more words per minute, directives, and verbs during play and more adjectives, descriptions, and questions during mealtime. Parental language differed based on child fine motor skills, receptive language, and levels of sensory hyporesponsiveness but not autism likelihood. Overall, this study found that parental language varies based on context and child developmental skills. Future research examining parental language should include pragmatic functions and context across developmental trajectories.

Severe Congenital Heart Defects and Cerebral Palsy.

OBJECTIVE: To report the prevalence of cerebral palsy (CP) in children with severe congenital heart defects (sCHD) and the outcome/severity of the CP. METHODS: Population-based, data linkage study between CP and congenital anomaly registers in Europe and Australia. The EUROCAT definition of severe CHD (sCHD) was used. Linked data from 4 regions in Europe and 2 in Australia were included. All children born in the regions from 1991 through 2009 diagnosed with CP and/or sCHD were included. Linkage was completed locally. Deidentified linked data were pooled for analyses. RESULTS: The study sample included 4989 children with CP and 3684 children with sCHD. The total number of livebirths in the population was 1 734 612. The prevalence of CP was 2.9 per 1000 births (95% CI, 2.8-3.0) and the prevalence of sCHD was 2.1 per 1000 births (95% CI, 2.1-2.2). Of children with sCHD, 1.5% (n = 57) had a diagnosis of CP, of which 35 (61%) children had prenatally or perinatally acquired CP (resulting from a brain injury at ≤28 days of life) and 22 (39%) children had a postneonatal cause (a brain injury between 28 days and 2 years). Children with CP and sCHD more often had unilateral spastic CP and more intellectual impairments than children with CP without congenital anomalies. CONCLUSIONS: In high-income countries, the proportion of children with CP is much higher in children with sCHD than in the background population. The severity of disease in children with CP and sCHD is milder compared with children with CP without congenital anomalies.

Patient-Reported Symptom Complexity and Acute Care Utilization Among Patients With Cancer: A Population-Based Study Using a Novel Symptom Complexity Algorithm and Observational Data.

BACKGROUND: Patients with cancer in Canada are often effectively managed in ambulatory settings; however, patients with unmanaged or complex symptoms may turn to the emergency department (ED) for additional support. These unplanned visits can be costly to the healthcare system and distressing for patients. This study used a novel patient-reported outcomes (PROs)-derived symptom complexity algorithm to understand characteristics of patients who use acute care, which may help clinicians identify patients who would benefit from additional support. PATIENTS AND METHODS: This retrospective observational cohort study used population-based linked administrative healthcare data. All patients with cancer in Alberta, Canada, who completed at least one PRO symptom-reporting questionnaire between October 1, 2019, and April 1, 2020, were included. The algorithm used ratings of 9 symptoms to assign a complexity score of low, medium, or high. Multivariable binary logistic regressions were used to evaluate factors associated with a higher likelihood of having an ED visit or hospital admission (HA) within 7 days of completing a PRO questionnaire. RESULTS: Of the 29,133 patients in the cohort, 738 had an ED visit and 452 had an HA within 7 days of completing the PRO questionnaire. Patients with high symptom complexity had significantly higher odds of having an ED visit (OR, 3.10; 95% CI, 2.59-3.70) or HA (OR, 4.20; 95% CI, 3.36-5.26) compared with low complexity patients, controlling for demographic covariates. CONCLUSIONS: Given that patients with higher symptom complexity scores were more likely to use acute care, clinicians should monitor these more complex patients closely, because they may benefit from additional support or symptom management in ambulatory settings. A symptom complexity algorithm can help clinicians easily identify patients who may require additional support. Using an algorithm to guide care can enhance patient experiences, while reducing use of acute care services and the accompanying cost and burden.

Temporal trends, clinical characteristics, and sociodemographic profile of post-neonatally acquired cerebral palsy in Australia, 1973-2012: A population-based observational study.

AIM: 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. METHOD: 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). χ2 and logistic regression analyses were used to assess associations between sociodemographic profile, Australian reference data, and known causes. RESULTS: A 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). INTERPRETATION: 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. WHAT THIS PAPER ADDS: 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.

Prevalence and trends for Aboriginal and Torres Strait Islander children living with cerebral palsy: A birds-eye view.

AIM: To provide a birds-eye view of the trends of cerebral palsy (CP) for Australian Aboriginal and Torres Strait Islander children and young adults. METHOD: Data were obtained for this population-based observational study from the Australian Cerebral Palsy Register (ACPR), birth years 1995 to 2014. The Indigenous status of children was classified by maternal Aboriginal and Torres Strait Islander or non-Indigenous status. Descriptive statistics were calculated for socio-demographic and clinical characteristics. Prenatal/perinatal and post-neonatal birth prevalence was calculated per 1000 live births and per 10 000 live births respectively, and Poisson regression used to assess trends. RESULTS: Data from the ACPR were available for 514 Aboriginal and Torres Strait Islander individuals with CP. Most children could walk independently (56%) and lived in urban or regional areas (72%). One in five children lived in socioeconomically disadvantaged remote/very remote areas. The birth prevalence of prenatal/perinatal CP declined after the mid-2000s from a high of 4.8 (95% confidence interval 3.2-7.0) to 1.9 per 1000 live births (95% confidence interval 1.1-3.2) (2013-2014), with marked declines observed for term births and teenage mothers. INTERPRETATION: The birth prevalence of CP in Aboriginal and Torres Strait Islander children in Australia declined between the mid-2000s and 2013 to 2014. This birds-eye view provides key stakeholders with new knowledge to advocate for sustainable funding for accessible, culturally safe, antenatal and CP services. WHAT THIS PAPER ADDS: Birth prevalence of cerebral palsy (CP) is beginning to decline for Aboriginal and Torres Strait Islanders. Recent CP birth prevalence for Aboriginal and Torres Strait Islanders is 1.9 per 1000 live births. Most children with CP live in more populated areas rather than remote or very remote areas. One in five Aboriginal and Torres Strait Islander children with CP live in socioeconomically disadvantaged remote areas.

Toddlers at Elevated Likelihood for Autism: Exploring Sensory and Language Treatment Predictors.

Baseline child characteristics may predict treatment outcomes in children with or at elevated likelihood of developing autism (EL-ASD). Little is known about the role of child sensory and language features on treatment outcome. Participants were randomly assigned to a parent-mediated intervention or control condition. Analyses explored the relationship between baseline child sensory and language characteristics and changes in ASD symptoms over approximately 9 months. Higher baseline sensory hyporeactivity was significantly related to less improvement in social communication (SC) for the treatment group only. More baseline atypical vocalizations were significantly related to less improvement on SC across treatment and control groups. This work provides an initial framework to encourage the tailoring of interventions for EL-ASD children, suggesting sensory reactivity and atypical vocalizations may be useful behaviors to consider in treatment planning.

Declining trends in birth prevalence and severity of singletons with cerebral palsy of prenatal or perinatal origin in Australia: A population-based observational study.

AIM: To investigate temporal trends in birth prevalence, disability severity, and motor type for singletons with prenatal or perinatally acquired cerebral palsy (CP). METHOD: 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. RESULTS: 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 at <28 weeks (average 8% per epoch, p < 0.001). Prevalence of moderate-severe disability declined for children born at <28 and ≥37 weeks (average 11% and 7% per epoch respectively, p < 0.001). The proportions of bilateral spastic CP declined (p < 0.001) at <28 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). INTERPRETATION: 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. WHAT THIS PAPER ADDS: 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 at <28 weeks and ≥37 weeks.

Developmental trajectories of sensory patterns from infancy to school age in a community sample and associations with autistic traits.

This prospective study examined the latent growth trajectories of sensory patterns among a North Carolina birth cohort (N = 1517; 49% boys, 87% White) across infancy (6-19 months), preschool (3-4 years), and school years (6-7 years). Change rates of sensory hyper- and hyporesponsiveness better differentiated children with an autism diagnosis or elevated autistic traits from those with other developmental conditions, including non-autistic children with sensory differences. More sensory hyper- and hyporesponsiveness at infancy followed by steeper increases differentially predicted more autistic traits at school age. Further, children of parents with higher education tended to show stable or improving trajectories. These findings highlight the importance of tracking sensory patterns from infancy for facilitating early identification of associated challenges and tailored support for families.

Early developmental profiles of sensory features and links to school-age adaptive and maladaptive outcomes: A birth cohort investigation.

Sensory-based subtypes among autistic children have been well documented, but little is known about longitudinal sensory subtypes beyond autistic populations. This prospective study aimed to identify subtypes based on trajectories of parent-reported sensory features measured at 6-19 months, 3-4, and 6-7 years of age among a community-based birth cohort (N = 1,517), and to examine their associations with school-age clinical and adaptive/maladaptive outcomes on a subset sample (N = 389). Latent class growth analysis revealed five trajectory subtypes varying in intensity and change rates across three sensory domains. In contrast to an Adaptive-All Improving subtype (35%) with very low sensory features and overall better school-age outcomes, an Elevated-All Worsening subtype (3%), comprised of more boys and children of parents with less education, was associated with most elevated autistic traits and poorest adaptive/maladaptive outcomes. Three other subtypes (62% in total) were generally characterized by stable or improving patterns of sensory features at mild to moderate levels, and challenges in certain outcome domains. Our findings indicate that characterizing children based on early sensory trajectories may contribute to earlier detection of subgroups of children with sensory challenges who are more likely to experience developmental challenges by school age, followed by early targeted interventions for improved long-term outcomes.

A fully resolved backbone phylogeny reveals numerous dispersals and explosive diversifications throughout the history of Asteraceae.

The sunflower family, Asteraceae, comprises 10% of all flowering plant species and displays an incredible diversity of form. Asteraceae are clearly monophyletic, yet resolving phylogenetic relationships within the family has proven difficult, hindering our ability to understand its origin and diversification. Recent molecular clock dating has suggested a Cretaceous origin, but the lack of deep sampling of many genes and representative taxa from across the family has impeded the resolution of migration routes and diversifications that led to its global distribution and tremendous diversity. Here we use genomic data from 256 terminals to estimate evolutionary relationships, timing of diversification(s), and biogeographic patterns. Our study places the origin of Asteraceae at ∼83 MYA in the late Cretaceous and reveals that the family underwent a series of explosive radiations during the Eocene which were accompanied by accelerations in diversification rates. The lineages that gave rise to nearly 95% of extant species originated and began diversifying during the middle Eocene, coincident with the ensuing marked cooling during this period. Phylogenetic and biogeographic analyses support a South American origin of the family with subsequent dispersals into North America and then to Asia and Africa, later followed by multiple worldwide dispersals in many directions. The rapid mid-Eocene diversification is aligned with the biogeographic range shift to Africa where many of the modern-day tribes appear to have originated. Our robust phylogeny provides a framework for future studies aimed at understanding the role of the macroevolutionary patterns and processes that generated the enormous species diversity of Asteraceae.

Sensory Features of Young Children From a Large Community Sample: Latent Factor Structures of the Sensory Experiences Questionnaire (Version 2.1, Short Form).

IMPORTANCE: Although three sensory factors (hyperresponsiveness [HYPO]; hyporesponsiveness [HYPER]; and sensory interests, repetitions, and seeking behaviors [SIRS]) have been demonstrated among a wide age range of clinical populations, they have not been well validated in the general population, especially with a large community sample of young children. OBJECTIVE: To validate the factor structure of the Sensory Experiences Questionnaire (Version 2.1, Short Form; SEQv2.1) in a community sample and to confirm the factor structure's existence in this sample. DESIGN: Caregivers completed the SEQv2.1, a parent-reported questionnaire designed to capture children's everyday sensory experiences. The latent factors of the SEQv2.1 were examined using confirmatory factor analysis. SETTING: North Carolina. PARTICIPANTS: Caregivers of 2,195 children age 3 yr were initially recruited through state birth records and were eligible to participate if the child did not have a history of serious medical problems and English was the family's primary language. OUTCOMES AND MEASURES: SEQv2.1. RESULTS: The SEQv2.1 showed validity in the community sample. Similar to previous research with clinical populations, the three broad patterns of sensory responsiveness were also confirmed in this large community sample of young children, but associations among the factors differed. CONCLUSIONS AND RELEVANCE: Validation of the three-sensory-factor structure in the general population suggests that these constructs are similar to those found with samples of participants with autism spectrum disorder and developmental disabilities. This finding underscores the importance of understanding the normative development of sensory features across a wider age range to better delineate qualitative differences underlying sensory features between clinical and general populations. What This Article Adds: Occupational therapists seeking to assess children's sensory features can use the SEQv2.1 not only with clinical samples but also with children in the general population.

Lessons learned about virtual cancer care and distress screening in the time of COVID-19.

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.

Validating a Patient-Reported Outcomes-Derived Algorithm for Classifying Symptom Complexity Levels Among Patients With Cancer.

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.

Improving the outcomes for cancer survivors in Canada: An interactive approach to competency development using the newly released CANO/ACIO Survivorship Manual.

CANO/ACIO has long recognized the important role oncology nurses play in improving outcomes for cancer survivors. To ensure oncology nurses have easy access to the updated evidence, as a basis for their practice, CANO/ACIO undertook the important work of updating the CANO/ACIO self-learning modules on survivorship and creating several new ones. This article highlights the current gaps in care experienced by cancer survivors in the months and years after their cancer treatments are completed and the important contributions that nurses can have in improving the quality of survivorship care. It also provides an interactive approach to competency development using the newly revised and rereleased Pan-Canadian Survivorship Manual.

Development of a national position statement on cancer patient navigation in Canada.

As the landscape of cancer care in Canada evolves, oncology nursing roles are developed to enhance the patient experience and address the changing needs of patients and families. Cancer Patient Navigation (CPN), an oncology nursing role focusing primarily on person-centred care coordination and system navigation, has become integral to providing high-quality cancer care in many Canadian jurisdictions. Since 2016, a national group of oncology nursing leaders have been engaged in convening and catalyzing our understanding of the role of patient navigation in the Canadian cancer context with the purpose of developing a national position statement on CPN. In this paper, we provide a historical analysis of the development of the forthcoming Canadian Association of Nurses in Oncology (CANO) position statement on CPN. We present an analysis of participant feedback from workshops at the 2016, 2017, and 2018 conferences, and meeting minutes from the National working group over this same time period. This paper serves as a concise historical summary of the evolution of CPN in Canada while providing a template for other groups looking to develop a consensus-based position statement.

Élaboration d'un énoncé de position national sur la navigation des patients atteints de cancer au Canada.

Au Canada, le paysage des soins du cancer évolue et les infirmières en oncologie sont appelées à jouer de nouveaux rôles afin d'améliorer l'expérience des patients et des familles et de répondre à leurs besoins toujours changeants. L'un de ces rôles, la navigation des patients atteints de cancer (NPC), vise principalement à coordonner les soins centrés sur la personne et à guider les patients dans le système de santé. Dans plusieurs provinces et territoires du Canada, la navigation est devenue essentielle pour offrir des soins de grande qualité aux patients cancéreux. Depuis 2016, des chefs de file des soins infirmiers oncologiques se réunissent au sein d'un groupe national pour synthétiser leur compréhension de la navigation des patients en contexte canadien afin d'élaborer un énoncé de position national sur la NPC. Dans le présent article, nous analyserons l'historique de l'élaboration de l'énoncé de position sur la NPC que publiera prochainement l'Association canadienne des infirmières en oncologie (ACIO/CANO). Nous analyserons également les commentaires des participants aux ateliers tenus dans le cadre des congrès de 2016, 2017 et 2018, de même que les comptes rendus des réunions du groupe de travail national qui ont eu lieu pendant cette même période. Le présent article se veut un sommaire historique concis de l'évolution de la NPC au Canada, ainsi qu'un modèle pour les autres groupes aspirant à rédiger un énoncé de position consensuel.

A whey/guar "preload" improves postprandial glycaemia and glycated haemoglobin levels in type 2 diabetes: A 12-week, single-blind, randomized, placebo-controlled trial.

AIMS: To evaluate the effects of 12 weeks of treatment with a whey/guar preload on gastric emptying, postprandial glycaemia and glycated haemoglobin (HbA1c) levels in people with type 2 diabetes (T2DM). MATERIALS AND METHODS: A total of 79 people with T2DM, managed on diet or metformin (HbA1c 49 ± 0.7 mmol/mol [6.6 ± 0.1%]), were randomized, in single-blind fashion, to receive 150 mL flavoured preloads, containing either 17 g whey protein plus 5 g guar (n = 37) or flavoured placebo (n = 42), 15 minutes before two meals, each day for 12 weeks. Blood glucose and gastric emptying (breath test) were measured before and after a mashed potato meal at baseline (without preload), and after the preload at the beginning (week 1) and end (week 12) of treatment. HbA1c levels, energy intake, weight and body composition were also evaluated. RESULTS: Gastric emptying was slower (P < 0.01) and postprandial blood glucose levels lower (P < 0.05) with the whey/guar preload compared to placebo preload, and the magnitude of reduction in glycaemia was related to the rate of gastric emptying at both week 1 (r = -0.54, P < 0.001) and week 12 (r = -0.54, P < 0.0001). At the end of treatment, there was a 1 mmol/mol [0.1%] reduction in HbA1c in the whey/guar group compared to the placebo group (49 ± 1.0 mmol/mol [6.6 ± 0.05%] vs. 50 ± 0.8 mmol/mol [6.7 ± 0.05%]; P < 0.05). There were no differences in energy intake, body weight, or lean or fat mass between the groups. CONCLUSIONS: In patients with well-controlled T2DM, 12 weeks' treatment with a low-dose whey/guar preload, taken twice daily before meals, had sustained effects of slowing gastric emptying and reducing postprandial blood glucose, which were associated with a modest reduction in HbA1c, without causing weight gain.

Survival and mortality in cerebral palsy: observations to the sixth decade from a data linkage study of a total population register and National Death Index.

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.

Cerebral palsy trends in Australia (1995-2009): a population-based observational study.

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<0.05). Birth prevalence per 1000 neonatal survivors declined amongst children born before 28 weeks (South Australia, Victoria p<0.001) and those born at or after 37 weeks (Victoria p<0.001, Western Australia p<0.002). Across Australia the percentage of children with bilateral spastic CP declined amongst those born less than 1000g. The percentage of children with moderate to severe disability decreased (48%-34%, p<0.001). INTERPRETATION: Birth prevalence of CP declined. Encouragingly, the percentage of children with CP whose disability was moderate to severe also decreased. WHAT THIS PAPER ADDS: Birth prevalence of cerebral palsy (CP) differed but declined across Australian states (1995-2009). Australian CP birth prevalence declined significantly amongst children born before 28 weeks and those born at or after 37 weeks. The percentage of children with moderate to severe disability decreased.

Sensory Features and Family Functioning in Families of Children With Autism and Developmental Disabilities: Longitudinal Associations.

IMPORTANCE: Children with autism spectrum disorder (ASD) and other developmental disabilities (DD) commonly display unusual responses to sensory input. Previous work has suggested concurrent associations linking sensory features with aspects of family functioning, including activity participation and caregiver strain. What is unknown, however, is the extent to which sensory features affect family functioning over time, as well as the influence of received services on these relationships. OBJECTIVE: To assess hypothesized longitudinal associations between sensory features and family functioning and examine interactions by group and service usage (i.e., educational and therapy services). DESIGN: Multigroup longitudinal observational study. SETTING: Community. PARTICIPANTS: A volunteer sample of 81 children (50 with ASD, 31 with DD; 76% male), ages 2-12 yr, and their caregivers participated in assessments at two points, 3.3 yr apart on average. OUTCOMES AND MEASURES: Key measures included the Sensory Experiences Questionnaire, Sensory Profile, Sensory Processing Assessment for Young Children, Tactile Defensiveness and Discrimination Test-Revised, Caregiver Strain Questionnaire, and Home and Community Activities Scale. We also measured the amount of time children received educational and therapy services. RESULTS: Regression analyses confirmed long-term associations linking sensory features with aspects of activity participation and caregiver strain in this population; group and service usage interactions were also identified. CONCLUSIONS AND RELEVANCE: Sensory features can affect the everyday experiences of both children and caregivers. It is important for practitioners to understand the potentially enduring effects of children's sensory features on family functioning so as to begin to identify supportive interventions with more optimal long-term effects.