Prevalence of intellectual disability in New South Wales, Australia: a multi-year cross-sectional dataset by Local Government Area (LGA)

© 2020 The Author(s) The presented dataset relates to a research project titled “My Home My Community” undertaken at University of Technology Sydney (UTS) which has been funded by the National Disability Insurance Agency (NDIA) Australia. The dataset reports estimated prevalence rates of Intellectual Disability in NSW by local government area (LGA) from 2010 – 2015. The dataset is a re-examination of a cohort of 92, 542 people with intellectual disability from a larger linked research dataset built by the Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW. The dataset in this paper is presented in a multi-year cross-sectional format. The cohort of people with Intellectual Disability was analysed to estimate, quantify and visualise where people with intellectual disability live in New South Wales (NSW). The cohort analysed in this dataset had been generated in an earlier project undertaken by the UNSW-based authors. This dataset was generated to share with local governments in Australia and has the potential to be more widely used in a range of health policy and planning research, and city and regional planning research environments. It represents one of the only datasets currently available in Australia on Intellectual Disability describing prevalence rates at a local government area level. This dataset allows for population comparisons in other Australian states and internationally and can be examined in combination with other social and economic datasets to continue to build evidence about disability, planning and geography

Epidemiology of gastrostomy insertion for children and adolescents with intellectual disability

The largest group of recipients of pediatric gastrostomy have neurological impairment with intellectual disability (ID). This study investigated trends in first gastrostomy insertion according to markers of disadvantage and ID etiology. Linked administrative and health data collected over a 32-year study period (1983–2014) for children with ID born between 1983 and 2009 in Western Australia were examined. The annual incidence rate change over calendar year was calculated for all children and according to socioeconomic status, geographical remoteness, and Aboriginality. The most likely causes of ID were identified using available diagnosis codes in the linked data set. Of 11,729 children with ID, 325 (2.8%) received a first gastrostomy within the study period. The incidence rate was highest in the 0–2 age group and there was an increasing incidence trend with calendar time for each age group under 6 years of age. This rate change was greatest in children from the lowest socioeconomic status quintile, who lived in regional/remote areas or who were Aboriginal. The two largest identified groups of ID were genetically caused syndromes (15.1%) and neonatal encephalopathy (14.8%). Conclusion: Gastrostomy is increasingly used in multiple neurological conditions associated with ID, with no apparent accessibility barriers in terms of socioeconomic status, remoteness, or Aboriginality.What is Known:• The use of gastrostomy insertion in pediatrics is increasing and the most common recipients during childhood have neurological impairment, most of whom also have intellectual disability (ID).What is New:• Nearly 3% of children with ID had gastrostomy insertion performed, with the highest incidence in children under 3 years of age.• Gastrostomy use across different social groups was equitable in the Australian setting

Cohort Profile:Health and Wellbeing of People with Intellectual Disability in New South Wales, Australia – A data linkage cohort

Purpose People with intellectual disability (ID) experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor. This cohort was established to develop an epidemiological profile related to the health, health service use, disability services, mortality and corrective services records of people with ID. Participants The cohort contains 92 542 people with ID (40% females) with a median age of 23 years (IQR: 12–43 years) and 2 004 475 people with a neuropsychiatric or developmental disorder diagnosis (50% females) with a median age of 51 years (IQR: 29–73 years) from New South Wales, Australia. The whole sample contains records for 2 097 017 individuals with most data sets spanning financial years 1 July 2001 to 30 June 2016. A wide range of data from linked population data sets are included in the areas of disability, health, corrective services and targeted specialist support services in public schools, Public Guardian and Ombudsman services. Findings to date This study includes one of the largest cohorts of people with ID internationally. Our data have shown that the presence of ID is significantly associated with emergency department presentations and psychiatric readmissions after the first psychiatric admission based on a subcohort of people with a psychiatric admission. Adults with ID experience premature mortality and over-representation of potentially avoidable deaths compared with the general population. Future plans Within the health service system, we will examine different components, that is, inpatient, emergency adult services, children and younger people services and costs associated with healthcare as well as mortality, cause and predictors of death. The neuropsychiatric and developmental disorders comparison cohort allows comparisons of the physical health, mental health and service use profiles of people with ID and those with other neuropsychiatric disorders

Survival of children and adolescents with intellectual disability following gastrostomy insertion

Background: Positive health outcomes have been observed following gastrostomy insertion in children with intellectual disability, which is being increasingly used at younger ages to improve nutritional intake. This study investigated the effect of gastrostomy insertion on survival of children with severe intellectual disability. Methods: We used linked disability and health data of children and adolescents who were born in Western Australia between 1983 and 2009 to compare survival of individuals with severe intellectual disability by exposure to gastrostomy status. For those born in 2000–2009, we employed propensity score matching to adjust for confounding by indication. Effect of gastrostomy insertion on survival was compared by pertinent health and sociodemographic risk factors. Results: Compared with children born in the 1980s–1990s, probability of survival following first gastrostomy insertion for those born in 2000–2009 was higher (2 years: 94% vs. 83%). Mortality risk was higher in cases than that in their matched controls (hazard ratio 2.9, 95% confidence interval 1.1, 7.3). The relative risk of mortality (gastrostomy vs. non-gastrostomy) may have differed by sex, birthweight and time at first gastrostomy insertion. Respiratory conditions were a common immediate or underlying cause of death among all children, particularly among those undergoing gastrostomy insertion. Conclusions: Whilst gastrostomy insertion was associated with lower survival rates than children without gastrostomy, survival improved with time, and gastrostomy afforded some protection for the more vulnerable groups, and earlier use appears beneficial to survival. Specific clinical data that may be used to prioritise the need for gastrostomy insertion may be responsible for the survival differences observed

Hidden Drug Resistant HIV to Emerge in the Era of Universal Treatment Access in Southeast Asia

Background: Universal access to first-line antiretroviral therapy (ART) for HIV infection is becoming more of a reality in most low and middle income countries in Asia. However, second-line therapies are relatively scarce. Methods and Findings: We developed a mathematical model of an HIV epidemic in a Southeast Asian setting and used it to forecast the impact of treatment plans, without second-line options, on the potential degree of acquisition and transmission of drug resistant HIV strains. We show that after 10 years of universal treatment access, up to 20 % of treatment-naïve individuals with HIV may have drug-resistant strains but it depends on the relative fitness of viral strains. Conclusions: If viral load testing of people on ART is carried out on a yearly basis and virological failure leads to effective second-line therapy, then transmitted drug resistance could be reduced by 80%. Greater efforts are required for minimizing first-line failure, to detect virological failure earlier, and to procure access to second-line therapies

Women experience a better long-term immune recovery and a better survival on HAART in Lao People's Democratic Republic.

<p>Abstract</p> <p>Background</p> <p>In April 2003, Médecins Sans Frontières launched an HIV/AIDS programme to provide free HAART to HIV-infected patients in Laos. Although HIV prevalence is estimated as low in this country, it has been increasing in the last years. This work reports the first results of an observational cohort study and it aims to identify the principal determinants of the CD4 cells evolution and to assess mortality among patients on HAART.</p> <p>Methods</p> <p>We performed a retrospective database analysis on patients initiated on HAART between 2003 and 2009 (CD4<200cells/μL or WHO stage 4). We excluded from the analysis patients who were less than 16 years old and pregnant women. To explore the determinants of the CD4 reconstitution, a linear mixed model was adjusted. To identify typical trajectories of the CD4 cells, a latent trajectory analysis was carried out. Finally, a Cox proportional-hazards model was used to reveal predictors of mortality on HAART including appointment delay greater than 1 day.</p> <p>Results</p> <p>A total of 1365 patients entered the programme and 913 (66.9%) received an HAART with a median CD4 of 49 cells/μL [IQR 15–148]. High baseline CD4 cell count and female gender were associated with a higher CD4 level over time. In addition, this gender difference increased over time. Two typical latent CD4 trajectories were revealed showing that 31% of women against 22% of men followed a high CD4 trajectory. In the long-term, women were more likely to attend appointments without delay. Mortality reached 6.2% (95% CI 4.8-8.0%) at 4 months and 9.1% (95% CI 7.3-11.3%) at 1 year. Female gender (HR=0.17, 95% CI 0.07-0.44) and high CD4 trajectory (HR=0.19, 95% CI 0.08-0.47) were independently associated with a lower death rate.</p> <p>Conclusions</p> <p>Patients who initiated HAART were severely immunocompromised yielding to a high early mortality. In the long-term on HAART, women achieved a better CD4 cells reconstitution than men and were less likely to die. This study highlights important differences between men and women regarding response to HAART and medical care, and questions men’s compliance to treatment.</p

Anemia and iron homeostasis in a cohort of HIV-infected patients in Indonesia

Contains fulltext : 97632.pdf (publisher's version ) (Open Access)BACKGROUND: Anemia is a common clinical finding in HIV-infected patients and iron deficiency or redistribution may contribute to the development of low hemoglobin levels. Iron overload is associated with a poor prognosis in HIV and Hepatitis C virus infections. Iron redistribution may be caused by inflammation but possibly also by hepatitis C co-infection. We examined the prevalence of anemia and its relation to mortality in a cohort of HIV patients in a setting where injecting drug use (IDU) is a main mode of HIV transmission, and measured serum ferritin and sTfR, in relation to anemia, inflammation, stage of HIV disease, ART and HCV infection. METHODS: Patient characteristics, ART history and iron parameters were recorded from adult HIV patients presenting between September 2007 and August 2009 in the referral hospital for West Java, Indonesia. Kaplan-Meier estimates and Cox's regression were used to assess factors affecting survival. Logistic regression was used to identity parameters associated with high ferritin concentrations. RESULTS: Anemia was found in 49.6% of 611 ART-naive patients, with mild (Hb 10.5 -12.99 g/dL for men; and 10.5-11.99 g/dL for women) anemia in 62.0%, and moderate to severe anemia (Hb < 10.5 g/dL) in 38.0%. Anemia remained an independent factor associated with death, also after adjustment for CD4 count and ART (p = 0.008). Seroprevalence of HCV did not differ in patients with (56.9%) or without anemia (59.6%). Serum ferritin concentrations were elevated, especially in patients with anemia (p = 0.07) and/or low CD4 counts (p < 0.001), and were not related to hsCRP or HCV infection. Soluble TfR concentrations were low and not related to Hb, CD4, hsCRP or ART. CONCLUSION: HIV-associated anemia is common among HIV-infected patients in Indonesia and strongly related to mortality. High ferritin with low sTfR levels suggest that iron redistribution and low erythropoietic activity, rather than iron deficiency, contribute to anemia. Serum ferritin and sTfR should be used cautiously to assess iron status in patients with advanced HIV infection

Impact of disability services on mental health service utilization in adults with intellectual disability

Background: Can disability support services (DS) facilitate access to mental health services (MHS) for people with intellectual disability? This study utilized 10 years of data from 6,260 persons in NSW who had received DS and specific MHS to quantify the relationship between DS utilization and MHS utilization in adults with intellectual disability and co-existing mental illness. Results: Receipt of DS was associated with greater odds of accessing community mental health (CMH) services (36%, 95% CI 29%–43%) but not psychiatric admissions. Age, sex and social disadvantage did not affect the odds of psychiatric admission or CMH use. Individuals living in a remote area had greater odds of CMH use and lesser odds of psychiatric admission. Conclusions: Receipt of DS was associated with greater CMH but not psychiatric hospital utilization in people with intellectual disability and co-existing mental illness

Emergency department presentation and readmission after index psychiatric admission: A data linkage study

Objective To use linked administrative datasets to assess factors associated with emergency department (ED) presentation and psychiatric readmission in three distinctive time intervals after the index psychiatric admission. Design A retrospective data-linkage study. Setting Cohort study using four linked government minimum datasets including acute hospital care from July 2005 to June 2012 in New South Wales, Australia. Participants People who were alive and aged ≥18 years on 1 July 2005 and who had their index admission to a psychiatric ward from 1 July 2007 to 30 June 2010. Outcome measures ORs of factors associated with psychiatric admission and ED presentation were calculated for three intervals: 0-1 month, 2-5 months and 6-24 months after index separation. Results Index admission was identified in 35 056 individuals (51% -males) with a median age of 42 years. A total of 12 826 (37%) individuals had at least one ED presentation in the 24 months after index admission. Of those, 3608 (28%) presented within 0-1 month, 6350 (50%) within 2-5 months and 10 294 (80%) within 6-24 months after index admission. A total of 14 153 (40%) individuals had at least one psychiatric readmission in the first 24 months. Of those, 6808 (48%) were admitted within 0-1 month, 6433 (45%) within 2-5 months and 7649 (54%) within 6-24 months after index admission. Principal diagnoses and length of stay at index admission, sociodemographic factors, Charlson Comorbidity Index score, drug and alcohol comorbidity, intellectual disability and other inpatient service use were significantly associated with ED presentations and psychiatric readmissions, and these relationships varied somewhat over the intervals studied. Conclusion Social determinants of service use, drug and alcohol intervention, addressing needs of individuals with intellectual disability and recovery-oriented whole-person approaches at index admission are key areas for investment to improve trajectories after index admission

Understanding anxiety in adults on the autism spectrum: An investigation of its relationship with intolerance of uncertainty, sensory sensitivities and repetitive behaviours

Anxiety is present in high rates in both children and adults on the autism spectrum. An increasing number of studies have highlighted the potentially important role that intolerance of uncertainty may have in anxiety for those on the spectrum, as well as their interrelationships with sensory sensitivities and repetitive behaviours. In response to a lack of studies involving adults, this study examined self-report survey data regarding intolerance of uncertainty, sensory sensitivities, repetitive behaviours and anxiety in a sample of 176 adults on the autism spectrum (mean age = 42). Intolerance of uncertainty and anxiety were both found to be elevated relative to non-autistic adults (N = 116) and significant, positive correlations were found between intolerance of uncertainty, anxiety, repetitive behaviours and sensory sensitivities in those on the spectrum. Intolerance of uncertainty was found to be a significant mediator between sensory sensitivities and anxiety, as well as between anxiety and insistence on sameness behaviours. These results were not sensitive to age. Intolerance of uncertainty is an important factor to be considered in the conceptualisation and management of elevated rates of anxiety for adults on the autism spectrum