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

The ageless question

A FEW days ago I turned seventy-five but, truth be told, I’ve been pondering the three-quarter-century mark ever since I reached seventy-four. Why it’s a milestone is hard to say, as it is with any kind of milestone. Officially, I became old on my sixtieth birthday, fifteen years ago. That’s when I got the treasured seniors card that enables me to travel on public transport at mercifully reasonable rates, although recent changes in the age pension mean that I wouldn’t now be eligible for it until I’d lived another year and a bit. Later, had I had superannuation, I would have been able to access my annuity tax-free, but I didn’t and, as a working senior, I still contribute to consolidated revenue in the form of income taxes. On the face of it, Commonwealth treasurers since Peter Costello must love me, but that isn’t so…Read the full articl

Precarious times

You shouldn’t have to work for free to break into the white-collar world, argues Ross Perlin in his new book. Sara Dowse agrees • WELCOME to the world of white-collar exploitation. What child labour and apprenticeships were to preceding centuries, internships are shaping up to be for ours. While the most prestigious are largely the preserve of the privileged – the offspring of parents who, having already underwritten their undergraduate and graduate years, can afford to support them further in unpaid or scarcely paid positions – those from lower-income families are forced to make huge sacrifices to get into the game. That so many internships are menial, pointless and anything but educational doesn’t negate their value for those seeking footholds in our increasingly globalised economy. Nor should it surprise us that the global financial crisis has kicked the business along… Read the full article in Inside Story Photo: zilli/ iStockphot

A femocrat's story, 1970s style

In April 1973, five months after Gough Whitlam was elected prime minister, a woman I admired for the talks she gave on women\u27s liberation became his women\u27s adviser. Elizabeth Reid had been one of ten on the short list. The others, including Susan Ryan, Anne Summers, Eva Cox and Lyndall Ryan, would become some of Australia\u27s most accomplished women, but the publicity leading up to Reid\u27s appointment was a farce. It would take decades before the media could handle issues concerning women with maturity, about the same time it took for Reid\u27s significance to sink in. Oddly, Reid did not see herself as a reformer, but believed that government action would be integral to a longer, more significant revolution in attitudes. In the beginning she sought advice from a small informal circle of public servants, several of whom had been appointed to senior positions never before occupied by women. Most were bone-hard pragmatists, but this was tempered by Reid\u27s presence, and, raw as it was, my own. The others guided us on what might actually be achieved in government and advised which people we needed to get on side. Thus developed the strange amalgam of hard political thinking and socialist-feminist analysis that was to characterise Australian feminist involvement in government for years to come

An illustrated leaflet containing antiretroviral information targeted for low-literate readers: development and evaluation

To apply a dual visual/textual modal approach in developing and evaluating a medicine information leaflet with pictograms suitable for low-literate HIV/AIDS patients. To identify and recommend best practices in this type of information design

Developing visual images for communicating information aboutantiretroviral side effects to a low-literate population:

The side effects of antiretroviral (ARV) therapy are linked to altered quality of life and adherence. Poor adherence has also been associated with low health-literacy skills, with an uninformed patient more likely to make ARV-related decisions that compromise the efficacy of the treatment. Low literacy skills disempower patients in interactions with healthcare providers and preclude the use of existing written patient information materials, which are generally written at a high reading level. Visual images or pictograms used as a counselling tool or included in patient information leaflets have been shown to improve patients’ knowledge, particularly in low-literate groups. The objective of this study was to design visuals or pictograms illustrating various ARV side effects and to evaluate them in a low-literate South African Xhosa population. Core images were generated either from a design workshop or from posed photos or images from textbooks. The research team worked closely with a graphic artist. Initial versions of the images were discussed and assessed in group discussions, and then modified and eventually evaluated quantitatively in individual interviews with 40 participants who each had a maximum of 10 years of schooling

The impact of illustrated side effect information on understanding and sustained retention of antiretroviral side effect knowledge:

Prompt management of side effects is critical to supporting adherence to antiretroviral (ARV) medication. This study examines the impact of presenting side effect information using simple text combined with pictograms on sustained knowledge of ARV side effects over three months. Previously designed side effect pictograms, combined with simple text, were incorporated into a side effects panel within an ARV information leaflet. In a randomised controlled study, 116 limited literacy HIV patients taking ARVs were randomly allocated to either control (standard care) or intervention groups (standard care plus illustrated information). Side effect knowledge was assessed at baseline, and intervention patients received the illustrated leaflet. Knowledge was re-tested at one and three months. Interpretation of side effect pictograms was evaluated at one month

Cohort profile : a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia

Purpose: People with intellectual disability are a minority group who experience poorer physical and mental health than the general population and have difficulty accessing healthcare services. There is lack of knowledge about healthcare service needs and gaps experienced by people with intellectual disability. This study aims to interrogate a large linked administrative data set containing hospital admissions, presentations to emergency departments (ED) and mortality data to provide evidence to inform the development of improved health and mental health services for this population. Participants: A retrospective cohort of people with intellectual disability (n=51 452) from New South Wales (NSW), Australia, to explore health and mental health profiles, mortality, pattern of health service use and associated costs between 2005 and 2013. The cohort is drawn from: the Disability Services Minimum Data Set; Admitted Patients Data Collection; Emergency Department Data Collection, Australian Bureau of Statistics Death Registry and Registry of Births, Deaths and Marriages. Mental health service usage among those with intellectual disability will be compared to a cohort of people who used mental health services (n=1 073 139) and service usage other than for mental health will be compared with published data from the general population. Findings to date: The median age of the cohort was 24 at the time of the last hospital admission and 21 at the last ED presentation. The cohort has a higher proportion of men than women and accounts for 0.6% of the NSW population in 2011. Over 70% had up to 5 ED presentations and hospitalisations between 2005 and 2012. A high proportion of people with intellectual disability live in the most disadvantaged neighbourhoods. Future plans: Results will be used to inform the development of more responsive healthcare, including improved interactions between health, social and disability supports. More generally, the results will assist the development of more inclusive policy frameworks for people with intellectual disability.10 page(s